On June 3, 2005 I turned 24. I couldn't help but thinking how far things had come in the CF community and the new medications that were out that helped people with CF live longer. When I was diagnosed, my Mom was told not to expect me to live past the age of 12. Here I was, 12 years past that, and although I was getting sicker, I was still alive. I had actually thinking about things that I wanted to do before I die and started to make a list of things that I wanted to do before I did or things that I had accomplished that meant a lot to me. Below are some of those things....
1. I had lived past the age that my Mom was told I would.
2. I had graduated High School with Honors.
3. I had graduated college with an Associate's Degree in Business Administration.
4. I got married and started a new life with Nate.
5. I wanted to be a Mommy although I knew that it was next to impossible with the upcoming transplants.
6. Go on a hot air balloon ride.
7. Go to France...I didn't take 7 years of French in school for nothing.
8. Go swimming with the dolphins.
9. Teach people who don't know about CF at least one thing about it.
10. Live to tell people about my experience with transplant and to urge others to get one too if they needed it.
I felt fortunate at that point that I had lived 24 years with CF but there was no way that I was going to give up that easily. That was not my style.
June 7-9, 2005
We left for my first trip to the Cleveland Clinic on June 7 for my appointments on the 8th and 9th. Nate, my Mom, and Mary (a friend of my and Nate's) went to Cleveland with me. We got into Cleveland and checked into our hotel around 5PM. We got to bed at a decent time that night because we had to be up early the next morning and I had a lot of appointments that day.
June 8
I first had to have x-rays and a CT scan of my lungs. I then met with the social worker who thought that I had a great attitude toward transplants but thought that I should also get some things resolved with Walt (my Dad) who had not been there for me since I was 4 years old. I then had to have PFT's, and do a 6 minute walk test. Overall, the doctors at the Cleveland Clinic said that my lungs were still functioning well enough for now but they had said that my x-rays and CT scans showed that my lungs looked really bad. They had a lot of mucus and scarring. I also saw the liver doctor that day but he didn't have much to say about the liver aspect of the transplant. Those talked were deferred until I had to go back out to Cleveland for the liver tests in July.
June 9
I had some time free of evaluations that morning so we went and met with one of Nate's college buddies and then it was back the the Clinic for more tests. I had an appointment with Dr. Marie Budev that day. She was the transplant doctor for my case. She informed us that there were 4 different surgeons doing lung transplants at the Cleveland Clinic and they had done 35 lung transplants so far in 2005. For my case, they had to decide if they wanted to do the lungs and liver at the same time. Dr. Budev liked the results of my tests and informed me that I still had time before I actually needed the transplants. She didn't want to do the transplants too early because of the risks that we would be taking when I was still fairly healthy. Dr. Budev put it really straight forward and said that if we took the 5 people who were in the room and give them all lung transplants, one person would be dead within the first year because of complications, infections, and/or the body rejecting the organs. So with these statistics, she would rather take the time to do a complete work-up before placing me on the transplant list. It was a very informative visit.
Over the next 8-10 months after those appointments, I had to have my liver evaluations (July 12-13) and had to have other tests to make sure that my body was okay to go through with the transplants. I had to have a mammogram, PAP smear, electrocardiogram, echocardiogram, bone density test, and regular dental work-ups. I also had to go back to Cleveland occasionally to have regular evaluations to assess if my lungs and liver were getting worse. At the end of all of this testing, there would be a decision on if I should be listed. If they didn't list me, I had to go back every three months for more testing. If I was listed at that time, Dr. Budev felt that the tranpslant would happen fairly quickly because I was young and I have Cystic Fibrosis. She had told me that CF patients are normally listed toward the top and that's why it would happen fairly quickly. I would only have 2.5 hours to get there because the lungs have a preservation time of 6 hours. In most cases the patient is in the hospitla for 12-14 days and then have to stay within an hour of the clinic for roughly 30 days for frequent check-ups and labs.
Jornal Entry from around that time....It's nice to know that I still have some time before the transplants really need to happen. After the appointments, everything is definitely more of a reality and it also makes it more scarey. Everyone keeps telling me that things will be fine, but who's to say that it will. I can only hope that the transplants are a success and that it prolongs my life a lot longer than the average age (mid 30's) for a CF patient. There are so many things that I feel that I still have to accomplish and I hope that I get to do so.
More from June/July 2005
On June 20th I had a normal appointment with Dr. Sexton. I told him that I had an increased cough and was getting short of breath more often. Other than that, I had been feeling fine. While I was at his office, I had a coughing fit and it led to me coughing up blood. He felt that there was an infection starting so he put me on Zosyn (IV antibiotic) and sent me home. At that point it was taking longer to get better than the previous times I had been on the IV.
I went to the oral surgeon in the end of June and found out that I had a wisdom tooth that was badly decayed and that it had to be pulled. The oral surgeon, Dr. Flihan, would not do anything with it until he talked to Dr. Sexton. He needed to know if it was okay to pull it in the office with just novicane or if I needed to be put under and have the wisdom tooth pulled in the hospital. It ended up being that it was okay to have it done in the office and it was pulled without a problem.
My co-workers at HGS started putting fundraisers together for me to raise money for the transplants. They did a dress down day where people had to pay to be able to dress down and that money went into my benefit account. My surperviser Lori was also putting together lunches to sell to people and she took the money out that it cost her to buy the supplies and then the profit went into my benefit account. They had atually raised a lot of money for my benefit account and it really helped.
July 12-13, 2005
I went back to the Cleveland Clinic for my liver transplant evaluations during this time and things went well. I flew out there by myself because Nate couldn't really take anymore time off of work and since there was no one to drive me out there, I had decided to fly. I met with the liver doctors on the 12th and it was mentioned that if I did not need the double lung transplant, I would not be getting the liver anytime soon. But, it had been decided that everything would happen all together because it was felt that with my liver being sick and failing, that it would not handle the new medications that I would be on for the lung transplant. Cleveland Clinic doctors had never done double lung and liver all together so none of us were sure as to how the transplant would work and how long my stay in the hospital would be. I knew that I was taking a risk with them and they were taking a risk with me, but apparently it was a risk that we were all willing to take.
End of July
A couple of weeks after I got back from my liver evaluations at the Clinic, I ended up back in the hospital from 7/25-7/29. That meant that I was in the hospital for my and Nate's 3rd Wedding Anniversary. I was in for breathing difficulties and after a few days, I got better and was sent home on IV antibiotics. I had since realized that I had not had my period since the end of May. My cycle was very irregular so I hadn't really thought much about it. Just to be on the safe side and to get the pregnancy test out of the way before I went to my doctor's office, I decided to buy a pregnancy test and take it at home. I thought that it would just get it out of the way so that I could tell the doctor that I had already done that test and that was not what was wrong with my cycle. Well......surprise! There were two lines (although one was faint) and that meant that I was pregnant! I was still not sure about this so I called my sister and asked her about false positives and she told me that it's normally only false negatives. She also told me to get one of the pregnancy tests that are digital read out and will say either "pregnant" or "not pregnant." I went out with Nate that night and bought one of those and I took the test the next morning before I went to work. Again, surprise!!! This test said pregnant. Now what was I to do???
Friday, December 5, 2008
Beginning of 2005
The beginning of 2005 was a little rough. I went to see Dr. Sexton a week after the cruise because I had not been feeling well. I had started running a fever and coughing up blood again. So, on February 7th I was admitted to the hospital. My fever kept spiking to 104 degrees and my oxygen level had fallen into the eighties. While admitted this time I had more CT scans, x-rays, blood work, and plasma transfusions (Fresh Frozen Plasma-FFP). Sputum tests revealed that I had pneumonia and staff infection. I was on a few antibiotics, breathing treatments, and had another embolization to stop the bleeding in my right lung. The CT scan and the blood work showed that my lungs and liver were worse than they were in November 2004. With the medications and embolization, I started feeling better except for the extreme bruising that I had from the embolization. I was released on Valentine's Day. I had to stay out of work for another week and stay on IV antibiotics through my port during that time.
During this time, we moved on with plans for the double lung and liver transplants. I was set up to have appointments done at Massachusetts General (although they were not sure about doing double lung and liver) only to find that the insurance (MVP) that I had through work was not contracted with MGH and they wouldn't pay for the transplants if I went there. We changed the clinic that I was going to go to to the Cleveland Clinic and waited to have the initial appointments set up there. In the process of this my insurance at worked changed to Blue Cross Blue Shield and I learned that BCBs would have paid for MGH but I decided to stay with the Cleveland Clinic. I received a phone call from Alan Stewart at the Cleveland Clinic and I received my appointment list in the mail for my initial appointments with them. I was to go to the Cleveland Clinic for the first time on June 8-9, 2005, just days after my 24th birthday.
April-May
I was busy for a little while in these months organizing a team for the Great Strides walk for Cystic Fibrosis. There was a total of 36 members on my team and our name was "Team Patti." I alone raised $968 and my whole team raised $1,643. Everyone who walked that day raised a total of over $35,000 which probably helped immensly with CF research. I met a few people that day but the people that I will remember forever are the people from "Team Tammy." I learned that Tammy had a double lung transplant at the age of 24 and died at the age of 35. She was a leader in a lot of things that she did and she had even carried the Olympic Torch. The last name of the family sounded familiar and I tried to figure out where I knew the name from and then finally it hit me that I had a French teacher at Groton High School by that last name. I mentioned that and they all looked at me and one of them said that she was part of their family. Mrs. Twitchell wasn't there but her husband was and I talked to him for a little while . He remembered that she had mentioned a long time ago that she had a girl in her French class who had CF and that must have been me. Sure enough it was!!
On the down side of all of this, I started getting sick again and went back to Dr. Sexton. I started back up on TOBI, kept taking Zythromax, and also had to take Cipro and Bactrim on top of that. Below is a journal entry from that time.
May 24, 2005
I'm so irritated with being sick constantly. I can only hope that the transplants happen soon and that things are better afterwards. I'm just looking forward to simple things such as being able to have a good laugh without coughing, playing my flute without getting out of breath, and just overall being able to breathe easier. It's the simple things that I really look forward to.
During this time, we moved on with plans for the double lung and liver transplants. I was set up to have appointments done at Massachusetts General (although they were not sure about doing double lung and liver) only to find that the insurance (MVP) that I had through work was not contracted with MGH and they wouldn't pay for the transplants if I went there. We changed the clinic that I was going to go to to the Cleveland Clinic and waited to have the initial appointments set up there. In the process of this my insurance at worked changed to Blue Cross Blue Shield and I learned that BCBs would have paid for MGH but I decided to stay with the Cleveland Clinic. I received a phone call from Alan Stewart at the Cleveland Clinic and I received my appointment list in the mail for my initial appointments with them. I was to go to the Cleveland Clinic for the first time on June 8-9, 2005, just days after my 24th birthday.
April-May
I was busy for a little while in these months organizing a team for the Great Strides walk for Cystic Fibrosis. There was a total of 36 members on my team and our name was "Team Patti." I alone raised $968 and my whole team raised $1,643. Everyone who walked that day raised a total of over $35,000 which probably helped immensly with CF research. I met a few people that day but the people that I will remember forever are the people from "Team Tammy." I learned that Tammy had a double lung transplant at the age of 24 and died at the age of 35. She was a leader in a lot of things that she did and she had even carried the Olympic Torch. The last name of the family sounded familiar and I tried to figure out where I knew the name from and then finally it hit me that I had a French teacher at Groton High School by that last name. I mentioned that and they all looked at me and one of them said that she was part of their family. Mrs. Twitchell wasn't there but her husband was and I talked to him for a little while . He remembered that she had mentioned a long time ago that she had a girl in her French class who had CF and that must have been me. Sure enough it was!!
On the down side of all of this, I started getting sick again and went back to Dr. Sexton. I started back up on TOBI, kept taking Zythromax, and also had to take Cipro and Bactrim on top of that. Below is a journal entry from that time.
May 24, 2005
I'm so irritated with being sick constantly. I can only hope that the transplants happen soon and that things are better afterwards. I'm just looking forward to simple things such as being able to have a good laugh without coughing, playing my flute without getting out of breath, and just overall being able to breathe easier. It's the simple things that I really look forward to.
Wednesday, December 3, 2008
Caribbean Cruise 2005
As I mentioned in my last blog, I was to go on a cruise in early 2005. I went with Nate, his parents (Dale and Gina), Nate's brother (Shane), and his brother's girlfriend. We left from Syracuse, NY on January 21 to fly down to Ft. Lauderdale, FL and we took off on our cruise from there the next day. This was the first time that I had ever been on a plane that I could remember. It really was not that bad other than the coughing fit that I had when we were taking off. I am going to take what I wrote in my journal and put it in here because if I didn't, I wouldn't remember the details of the cruise.
Sunday, January 23, 2005
We started off on our cruise yesterday! It's so unbelievable that we are out in the middle of the ocean. Getting here wasn't as easy as we had hoped though. Our flight was scheduled to take off at 11:11AM on Friday and we didn't end up flying out until 1:55PM. When the plane that were supposed to fly on landed in Syracuse from Atlanta, they had a hard time opening the door. They later found out that the door was bent and the flight was indefinitely delayed. The airline employees suggested that we get booked on another flight and that's what we did. We were booked on the next flight out to Atlanta at 1:55 and then from there to Ft. Lauderdale. We were also bumped up to first class from Atlanta to Ft. Lauderdale. We coudln't complain! We ended up in Ft. Lauderdale at 9PM instead of 4PM like we were supposed to be.
Saturday morning I woke up at about 6AM and got dressed. After we were all ready and most of the way packed, we went to breakfast and then for a walk around the area of the hotel. It was a nice sunny morning and the walk was fun. We saw a lot of buildings that were just built with stores that will be opening soon. I was also taking notice of all of the palm trees because that was my first time ever seeing one other than on TV.
After the walk, we gathered our things and waited for the hotel transportation to take us to the pier to board the Carnival Legend. We saw a bunch of different ships, seven of them to be taking off that day, including Celebrity Cruises, Princess Cruises, and the Queen Mary 2. That ship is HUGE! Boarding the ship wasn't as much of a hassle as we thought it would be. The line was long but it moved fairly quickly. They took our luggage first, then we went by a place and had our "welcome aboard" picture taken, showed our tickets and got our cards, went through security, had our pictures taken to be put on our cards, and finally boarded the ship.
Once inside the ship, I was amazed! It was so fancy. There are so many different restaurants, bars, and a bunch of other things, inclusing a pizzeria that is open 24 hours a day. I love it!
Monday, January 24, 2005
There's still even more that amazes me about the ship. Last night was our first formal night on the cruise. I went to the salon and got my hair highlighted, cut, and styled. Nate and I had formal pictures taken and most of them turned out really nice. We bought a few of them and had one pose copied into wallets. These are the first portraits that we have had done in the 6.5 years that we have been together.
The Captain's dinner was fun last night. The waiters and waitresses all formed a line and went running through the dining hall flinging their towels all around. They all sang a song to us too. For this dinner, I had Victorian Perch with some sort of fancy shredded potatoes and sauce. It was good.
Thursday, February 24, 2005
So, here we are, a month from when I last wrote. There has been so much going on and some of it is kind of frustrating. I don't know whether to cry, laugh, or just shrug things off. Anyway, the rest of the cruise was excellent. We stopped in St. Marrten on January 25, which was Dale and Gina's 30th Wedding Anniversary. On that island we went to a butterfly farm. There were these blue butterflies that were amazingly beautiful! It was awesome just to have butterflies flying all around me. The tour of the rest of the island was okay. To me, it kind of looked like a 3rd World country with all of the houses looking like run-down shacks and goats and sheep on the loose everywhere. It was interesting to see it but I don't think that I would want to go back there. That night, we all went to the Dinner Club on the ship for dinner and the food was excellent!
The next day (1/26), Nate and I went on a tour of Harrison's Cave and on a Tiami Sunset Cruise in Barbados. Barbados is such a beautiful place and I wouldn't mind living there. The cave was interesting to me but Nate says that Howe Caverns in the US is better. The catamaran that we were on for the sunset cruise in Barbados was nice and the views were awesome. We went by the hotel that Tiger Woods bought out for a whole week for his wedding/honey moon. The tour guide told us that one night in a room there costs $3,000. That's a little bit too rich for my blood! Overall, our day in Barbados went well and I want to go back there for vacation sometime.
Our stop in Martinique on January 27 was interesting. I was amazed with the sites on this island. The water was breathtakingly blue and the scenery was the greenest and most beautiful that I had ever seen. I saw a valcano for the first time other than seeing it on TV. This valcano last erupted in 1902, killing everyone on the island except for one man who was in prison at the time. So, on this island, we went on a Calypso party boat tour. Within 10 minutes of starting out on the tour, a guy had spilled his rum punch all over me and I had to put up with the smell for the rest of the trip. We went out to a beach and spent two hours there. I found some interesting shells, saw a sea cucumber for the first time ever, and also found some live starfish. Gina packed up some of the starfish and brought them home. On the way back to the ship, we stopped near a bat cave. There were a lot of bats in there and there were also some very pretty tropical fish in the water near the party boat. I would love to go back to Martinique sometime and see more of the island and not just the beach that we were on.
The last two days of the cruise were spent at sea, making our way back to Florida. Our last day in the dining room was very memorable. We had a very good dinner and a special dessert. It is called Baked Alaska and it was delicious. All of the waiters, waitresses, and hostesses sang a goodbye song to us and I almost cried. Our last day on the ship was very rocky as the waves in the ocean were 10-14 feet high. They closed the outside decks to keep us all safe. Many people were sick, including me. I stayed in bed practically all day because I was too sick to be up and moving about.
The cruise came to an end when we got off the Carnival Legend and were back on dry land in Florida. We spent the day in Ft. Lauderdale doing some touring on a water taxi. The estates that we were seeing cost millions of dollars and so do the yachts. I could only imagine what I would do with that kind of money!! We went to the Cheesecake factory for dinner that night and I didn't like anything that I got for dinner. There seemed to be no true flavor in any of the food.
January 31, 2005 was our day to travel back home. When we were boarding the plane for our flight from Ft. Lauderdale to Atlanta, my seat was changed due to my inability to feel comfortable opening an exit door and directing people to it if anything were to go wrong. I ended up sitting next to a girl named Laura Czarny. When we took off, I started coughing really bad and she asked what was wrong. I told her about my medical history and she tole me about her sister Cheryl. They had also had a rough time throughout their lives. Before we got off of the plane in Atlanta, we exchanged e-mail addresses and promised to keep in touch. She also said that she wanted to give me something because I needed it more than she did. I was thinking, what on earth could anyone give me that I needed mor then them when they just met me?? And then she handed me a Rosary. It is very beautiful and she told me that it used to be her mother's. I told her that I couldn't take it and she told me that I must, so I did. I truly believe that someone was watching over me and she was my Guardian Angel that was sent to prove that everything will be okay.
Coming back to NY that day was the realization that our vacation was over and that it may be my last one for quite a while. The weather was completely different from where we were. We had been in 70-90 degree weather and we came back to freezing temperatures. That made me wish that we lived in temperatures like that year round. Maybe I wouldn't get sick so often.
Now back to present day 2008.....the cruise was an experience of a lifetime! I believe that we are going to be going again in the next couple of years. I would recommend that everyone go on a cruise if the opportunity arises. Healthwise, that week was the best that I had felt in a really long time. I still have the Rosary that Laura gave me and the last time that I talked to her was earlier this year. Her sister has since published a children's book about being in the hospital and that book sits on my bookcase in my room.
Sunday, January 23, 2005
We started off on our cruise yesterday! It's so unbelievable that we are out in the middle of the ocean. Getting here wasn't as easy as we had hoped though. Our flight was scheduled to take off at 11:11AM on Friday and we didn't end up flying out until 1:55PM. When the plane that were supposed to fly on landed in Syracuse from Atlanta, they had a hard time opening the door. They later found out that the door was bent and the flight was indefinitely delayed. The airline employees suggested that we get booked on another flight and that's what we did. We were booked on the next flight out to Atlanta at 1:55 and then from there to Ft. Lauderdale. We were also bumped up to first class from Atlanta to Ft. Lauderdale. We coudln't complain! We ended up in Ft. Lauderdale at 9PM instead of 4PM like we were supposed to be.
Saturday morning I woke up at about 6AM and got dressed. After we were all ready and most of the way packed, we went to breakfast and then for a walk around the area of the hotel. It was a nice sunny morning and the walk was fun. We saw a lot of buildings that were just built with stores that will be opening soon. I was also taking notice of all of the palm trees because that was my first time ever seeing one other than on TV.
After the walk, we gathered our things and waited for the hotel transportation to take us to the pier to board the Carnival Legend. We saw a bunch of different ships, seven of them to be taking off that day, including Celebrity Cruises, Princess Cruises, and the Queen Mary 2. That ship is HUGE! Boarding the ship wasn't as much of a hassle as we thought it would be. The line was long but it moved fairly quickly. They took our luggage first, then we went by a place and had our "welcome aboard" picture taken, showed our tickets and got our cards, went through security, had our pictures taken to be put on our cards, and finally boarded the ship.
Once inside the ship, I was amazed! It was so fancy. There are so many different restaurants, bars, and a bunch of other things, inclusing a pizzeria that is open 24 hours a day. I love it!
Monday, January 24, 2005
There's still even more that amazes me about the ship. Last night was our first formal night on the cruise. I went to the salon and got my hair highlighted, cut, and styled. Nate and I had formal pictures taken and most of them turned out really nice. We bought a few of them and had one pose copied into wallets. These are the first portraits that we have had done in the 6.5 years that we have been together.
The Captain's dinner was fun last night. The waiters and waitresses all formed a line and went running through the dining hall flinging their towels all around. They all sang a song to us too. For this dinner, I had Victorian Perch with some sort of fancy shredded potatoes and sauce. It was good.
Thursday, February 24, 2005
So, here we are, a month from when I last wrote. There has been so much going on and some of it is kind of frustrating. I don't know whether to cry, laugh, or just shrug things off. Anyway, the rest of the cruise was excellent. We stopped in St. Marrten on January 25, which was Dale and Gina's 30th Wedding Anniversary. On that island we went to a butterfly farm. There were these blue butterflies that were amazingly beautiful! It was awesome just to have butterflies flying all around me. The tour of the rest of the island was okay. To me, it kind of looked like a 3rd World country with all of the houses looking like run-down shacks and goats and sheep on the loose everywhere. It was interesting to see it but I don't think that I would want to go back there. That night, we all went to the Dinner Club on the ship for dinner and the food was excellent!
The next day (1/26), Nate and I went on a tour of Harrison's Cave and on a Tiami Sunset Cruise in Barbados. Barbados is such a beautiful place and I wouldn't mind living there. The cave was interesting to me but Nate says that Howe Caverns in the US is better. The catamaran that we were on for the sunset cruise in Barbados was nice and the views were awesome. We went by the hotel that Tiger Woods bought out for a whole week for his wedding/honey moon. The tour guide told us that one night in a room there costs $3,000. That's a little bit too rich for my blood! Overall, our day in Barbados went well and I want to go back there for vacation sometime.
Our stop in Martinique on January 27 was interesting. I was amazed with the sites on this island. The water was breathtakingly blue and the scenery was the greenest and most beautiful that I had ever seen. I saw a valcano for the first time other than seeing it on TV. This valcano last erupted in 1902, killing everyone on the island except for one man who was in prison at the time. So, on this island, we went on a Calypso party boat tour. Within 10 minutes of starting out on the tour, a guy had spilled his rum punch all over me and I had to put up with the smell for the rest of the trip. We went out to a beach and spent two hours there. I found some interesting shells, saw a sea cucumber for the first time ever, and also found some live starfish. Gina packed up some of the starfish and brought them home. On the way back to the ship, we stopped near a bat cave. There were a lot of bats in there and there were also some very pretty tropical fish in the water near the party boat. I would love to go back to Martinique sometime and see more of the island and not just the beach that we were on.
The last two days of the cruise were spent at sea, making our way back to Florida. Our last day in the dining room was very memorable. We had a very good dinner and a special dessert. It is called Baked Alaska and it was delicious. All of the waiters, waitresses, and hostesses sang a goodbye song to us and I almost cried. Our last day on the ship was very rocky as the waves in the ocean were 10-14 feet high. They closed the outside decks to keep us all safe. Many people were sick, including me. I stayed in bed practically all day because I was too sick to be up and moving about.
The cruise came to an end when we got off the Carnival Legend and were back on dry land in Florida. We spent the day in Ft. Lauderdale doing some touring on a water taxi. The estates that we were seeing cost millions of dollars and so do the yachts. I could only imagine what I would do with that kind of money!! We went to the Cheesecake factory for dinner that night and I didn't like anything that I got for dinner. There seemed to be no true flavor in any of the food.
January 31, 2005 was our day to travel back home. When we were boarding the plane for our flight from Ft. Lauderdale to Atlanta, my seat was changed due to my inability to feel comfortable opening an exit door and directing people to it if anything were to go wrong. I ended up sitting next to a girl named Laura Czarny. When we took off, I started coughing really bad and she asked what was wrong. I told her about my medical history and she tole me about her sister Cheryl. They had also had a rough time throughout their lives. Before we got off of the plane in Atlanta, we exchanged e-mail addresses and promised to keep in touch. She also said that she wanted to give me something because I needed it more than she did. I was thinking, what on earth could anyone give me that I needed mor then them when they just met me?? And then she handed me a Rosary. It is very beautiful and she told me that it used to be her mother's. I told her that I couldn't take it and she told me that I must, so I did. I truly believe that someone was watching over me and she was my Guardian Angel that was sent to prove that everything will be okay.
Coming back to NY that day was the realization that our vacation was over and that it may be my last one for quite a while. The weather was completely different from where we were. We had been in 70-90 degree weather and we came back to freezing temperatures. That made me wish that we lived in temperatures like that year round. Maybe I wouldn't get sick so often.
Now back to present day 2008.....the cruise was an experience of a lifetime! I believe that we are going to be going again in the next couple of years. I would recommend that everyone go on a cruise if the opportunity arises. Healthwise, that week was the best that I had felt in a really long time. I still have the Rosary that Laura gave me and the last time that I talked to her was earlier this year. Her sister has since published a children's book about being in the hospital and that book sits on my bookcase in my room.
Friday, October 17, 2008
2003-2004
I don't remember much of 2003 other than moving into our new home and starting some of the work that needed to be done to it. I think that we had the windows replaced in October that year and we also replaced almost all of the light fixtures. I know that as the year went on, I was getting sicker than I had been in a while.
I worked a couple of different jobs that year. When we first moved up to the Utica area I was working at a photo lab in Target. That was an interesting job. I had never done anything with developing photos or mixing chemicals before and that was what I had to do in this job. I loved it but when a better opportunity came along, I took it and left.
I went on to work for Sports Physical Therapy of NY in Rome, NY as a secretary. I also loved that job but the 30 minute travel to work and then home was one of the things that I could have done without. After not too long of being at that job, I got another offer at another physical therapy place. This job was also as a secretary but it was a lot closer to home and it was for more pay. I liked the job and it definitely kept me busy but I continued to get sicker while working there. Not that the job was making me sick, but my health because of the Cystic Fibrosis was deteriorating. I would even go into work when I was on IV medications because that was the way of life for me and the only way to keep a somewhat normal one and not be in the hospital for weeks on end. That's what most people do when they have CF.
Everything was getting worse and got much worse for me. I had been working at this place for about 5 months and had not had my 3 month review yet. I was so pissed the day that I came into work, on a Friday in March of 2004, and was told to come into a back room and was handed my last check and they told me that they were letting me go. I looked at them and was like 'what.' I had been sick a day or two prior with a lot of coughing and running fevers and came back to getting fired. Tell me that that doesn't look suspicious! I was told that they did my 3 month review and they thought that I was not up to where they wanted me to be. Okay, there were a few things that I found wrong here....#1) I was supposed to be there for my review and #2) Why did they do it on a day that I was out sick? They proceeded to tell me that I was not doing what I was hired for, that the billing office wasn't getting codes for billing on time, and that they needed to be able to pull me in 10 different directions at once and they felt that they couldn't do that with me. Here are my problems with that.....I was doing way more than what I was hired for. The longer that I worked for this immoral lady, the more work that she gave me every day to do. She even wanted me to go in a put ice packs or hot packs on her patients which you are not supposed to do without a license in physical or occupational therapy, which I did not have. The reason that things were not getting to billing on time was also the owner's fault. I would look over her codes that she was billing and if there was something wrong, I would have to send the paper back to her and tell her to bill under a different code. Well, this would take forever for her to do. I would have to tell her that I needed it and she would keep ignoring it. When I brought this up in my abrupt exit interview, I was told that I should have just kept hounding her until it was done. Was it my job to run the office and make sure that she did her job? No! I was not the office manager and I was not the owner. The lady pulling all of this crap was the owner and that day, I lost absolutely all respect for her. I think that she is a cold hearted woman and would never work for her again. And last, who in the world, sick or not, could be pulled in 10 different directions at once??? This lady was not right and if I was faced with the opportunity to tell her how I feel about her, I would.
Well, that same day that I was fired, I went down to a hiring agency (that I had used before) and I had a job somewhere else that same day. I started training at my new job that Monday and then a couple of days later I ended up in the hospital with Pneumonia. Well, I lost that job opportunity too. I think that I was in the hospital for about a week and then was released on IV antibiotics. Not too long after, I had another temporary job that went great. It lasted for about a month or two and then the job was finished. I then went on to babysit for a family with 4 kids and did that for a while. When I wasn't really needed there anymore, I babysat for another family who had a set of twin boys who were not a year old yet. It was nice babysitting them but my hands were full. One of the boys had cerebal paulsy and needed more help than the other. They were both so adorable and I absolutely loved them! It wasn't too long before I had to move on from babysitting them and get a job where I was making more money. I got another temporary job offer from the job agency and I started working at Centrex.
Centrex is a lab that does blood work, urine tests, drug tests, and sets up home draws for people who can't make it to the lab. I worked in the part setting up home visits. It really didn't take me long to get used to that job and get good at it too. It was only a temporary job though so I was still looking for a permanent job. I had applied for jobs at a bank and for a place called The House of the Good Shepherd. Not too long after I had applied at both, I had interviews for both. Both of the interviews went well and I had 2nd interviews for both. The day that I had the 2nd interview at the House of the Good Shepherd, I was offered the job. I thought about it and I accepted the job!! That same day that I accepted the job, I had had a rough time with a customer on the phone at Centrex. I was called back to Human Resources at Centrex and I thought that I was in trouble because of the phone call that I had taken where the guy was irate. I thought that I had handled the phone call well and stayed calm. Well, I had been called back to the office for a completely different reason. The person who was supposed to be moving into the position that I was filling in for decided not to take the position and I was offered the job. They wanted to hire me straight on instead of being temp. I told them that I couldn't take the job because I just took a job somewhere else and that if they had told me like the day before or earlier that day that they wanted me to stay, I probably would have.
If those two job offers were not enough, I got home and there was a message on my phone that the bank that I interviewed at also wanted to hire me. I went through most of the summer trying to find a job and got turned down left and right, and then all in one day I had three job offers!! It was crazy! But I had accepted the job at the House of the Good Shepherd and I started that job in August 2004. I was hired there as the Administrative Secretary and has many jobs to do under that title. I was a little nervous at first because I shared an office with my supervisor but she was cool and I got really used to it. I had not told anyone in the interviews that I had, that I had Cystic Fibrosis. I didn't want to be turned down for a job because I had CF because I knew that I was a hard worker no matter what. But, not too long after I was hired, I started to get really sick and needed to go on IV antibiotics and had to tell them that I had CF. They all took it really well! I did have to explain to some people what CF was but I don't mind doing that.
In November of that year, I ended up in the hospital for a really bad infection that would not go away. I think that it was Thanksgiving day that I was admitted for coughing up blood (hemoptysis) and the infection. I was taken out of the ER and put into isolation because the doctors thought that I had TB. At that time, I did not know that CF symptoms could immitate having TB. My CF doctor (Dr. Sexton) was so livid that I was put in isolation. When a CT scan was done of my lungs, Dr. Sexton told me that I had holes in my lungs and the upper right lobe as non-functional. My liver disease was also progressing. Dr. Sexton brought up the conversation of lung and liver transplants not being too far off and that we needed to find a transplant (Tx) clinic and get the evaluations started. That was the hardest news to hear but I knew what I had to do to keep myself here.
We were going to go with Massachusetts General Hospital (MGH) but when we were getting things set up to go there we found out that the insurance that I had through my work would not cover that hospital so we had to find a different one. And that's when the search started and we found Cleveland Clinic. The evaluations didn't start until much later though.
In the end of 2004, I had a follow-up appointment with Dr. Sexton and I talked to him about a cruise that I was going on in January 2005 and he told me that it was probably not the best idea to go since I was getting so sick. I think that it was an intern that told him that if I was going to be going through all this Tx stuff and continue to get sick, why not let me have one last vacation. Dr. Sexton made me promise that if anything were to go wrong on the cruise, I would be life flighted off of the cruise and taken to the nearest hospital (which would be in Florida) and once I was stabilized there, I would go to my clinic in Syracuse. I promised and then it was decided that I would go on probably my last vacation before things deteriorated even more. That was great news and that was the end of a rough year.
I worked a couple of different jobs that year. When we first moved up to the Utica area I was working at a photo lab in Target. That was an interesting job. I had never done anything with developing photos or mixing chemicals before and that was what I had to do in this job. I loved it but when a better opportunity came along, I took it and left.
I went on to work for Sports Physical Therapy of NY in Rome, NY as a secretary. I also loved that job but the 30 minute travel to work and then home was one of the things that I could have done without. After not too long of being at that job, I got another offer at another physical therapy place. This job was also as a secretary but it was a lot closer to home and it was for more pay. I liked the job and it definitely kept me busy but I continued to get sicker while working there. Not that the job was making me sick, but my health because of the Cystic Fibrosis was deteriorating. I would even go into work when I was on IV medications because that was the way of life for me and the only way to keep a somewhat normal one and not be in the hospital for weeks on end. That's what most people do when they have CF.
Everything was getting worse and got much worse for me. I had been working at this place for about 5 months and had not had my 3 month review yet. I was so pissed the day that I came into work, on a Friday in March of 2004, and was told to come into a back room and was handed my last check and they told me that they were letting me go. I looked at them and was like 'what.' I had been sick a day or two prior with a lot of coughing and running fevers and came back to getting fired. Tell me that that doesn't look suspicious! I was told that they did my 3 month review and they thought that I was not up to where they wanted me to be. Okay, there were a few things that I found wrong here....#1) I was supposed to be there for my review and #2) Why did they do it on a day that I was out sick? They proceeded to tell me that I was not doing what I was hired for, that the billing office wasn't getting codes for billing on time, and that they needed to be able to pull me in 10 different directions at once and they felt that they couldn't do that with me. Here are my problems with that.....I was doing way more than what I was hired for. The longer that I worked for this immoral lady, the more work that she gave me every day to do. She even wanted me to go in a put ice packs or hot packs on her patients which you are not supposed to do without a license in physical or occupational therapy, which I did not have. The reason that things were not getting to billing on time was also the owner's fault. I would look over her codes that she was billing and if there was something wrong, I would have to send the paper back to her and tell her to bill under a different code. Well, this would take forever for her to do. I would have to tell her that I needed it and she would keep ignoring it. When I brought this up in my abrupt exit interview, I was told that I should have just kept hounding her until it was done. Was it my job to run the office and make sure that she did her job? No! I was not the office manager and I was not the owner. The lady pulling all of this crap was the owner and that day, I lost absolutely all respect for her. I think that she is a cold hearted woman and would never work for her again. And last, who in the world, sick or not, could be pulled in 10 different directions at once??? This lady was not right and if I was faced with the opportunity to tell her how I feel about her, I would.
Well, that same day that I was fired, I went down to a hiring agency (that I had used before) and I had a job somewhere else that same day. I started training at my new job that Monday and then a couple of days later I ended up in the hospital with Pneumonia. Well, I lost that job opportunity too. I think that I was in the hospital for about a week and then was released on IV antibiotics. Not too long after, I had another temporary job that went great. It lasted for about a month or two and then the job was finished. I then went on to babysit for a family with 4 kids and did that for a while. When I wasn't really needed there anymore, I babysat for another family who had a set of twin boys who were not a year old yet. It was nice babysitting them but my hands were full. One of the boys had cerebal paulsy and needed more help than the other. They were both so adorable and I absolutely loved them! It wasn't too long before I had to move on from babysitting them and get a job where I was making more money. I got another temporary job offer from the job agency and I started working at Centrex.
Centrex is a lab that does blood work, urine tests, drug tests, and sets up home draws for people who can't make it to the lab. I worked in the part setting up home visits. It really didn't take me long to get used to that job and get good at it too. It was only a temporary job though so I was still looking for a permanent job. I had applied for jobs at a bank and for a place called The House of the Good Shepherd. Not too long after I had applied at both, I had interviews for both. Both of the interviews went well and I had 2nd interviews for both. The day that I had the 2nd interview at the House of the Good Shepherd, I was offered the job. I thought about it and I accepted the job!! That same day that I accepted the job, I had had a rough time with a customer on the phone at Centrex. I was called back to Human Resources at Centrex and I thought that I was in trouble because of the phone call that I had taken where the guy was irate. I thought that I had handled the phone call well and stayed calm. Well, I had been called back to the office for a completely different reason. The person who was supposed to be moving into the position that I was filling in for decided not to take the position and I was offered the job. They wanted to hire me straight on instead of being temp. I told them that I couldn't take the job because I just took a job somewhere else and that if they had told me like the day before or earlier that day that they wanted me to stay, I probably would have.
If those two job offers were not enough, I got home and there was a message on my phone that the bank that I interviewed at also wanted to hire me. I went through most of the summer trying to find a job and got turned down left and right, and then all in one day I had three job offers!! It was crazy! But I had accepted the job at the House of the Good Shepherd and I started that job in August 2004. I was hired there as the Administrative Secretary and has many jobs to do under that title. I was a little nervous at first because I shared an office with my supervisor but she was cool and I got really used to it. I had not told anyone in the interviews that I had, that I had Cystic Fibrosis. I didn't want to be turned down for a job because I had CF because I knew that I was a hard worker no matter what. But, not too long after I was hired, I started to get really sick and needed to go on IV antibiotics and had to tell them that I had CF. They all took it really well! I did have to explain to some people what CF was but I don't mind doing that.
In November of that year, I ended up in the hospital for a really bad infection that would not go away. I think that it was Thanksgiving day that I was admitted for coughing up blood (hemoptysis) and the infection. I was taken out of the ER and put into isolation because the doctors thought that I had TB. At that time, I did not know that CF symptoms could immitate having TB. My CF doctor (Dr. Sexton) was so livid that I was put in isolation. When a CT scan was done of my lungs, Dr. Sexton told me that I had holes in my lungs and the upper right lobe as non-functional. My liver disease was also progressing. Dr. Sexton brought up the conversation of lung and liver transplants not being too far off and that we needed to find a transplant (Tx) clinic and get the evaluations started. That was the hardest news to hear but I knew what I had to do to keep myself here.
We were going to go with Massachusetts General Hospital (MGH) but when we were getting things set up to go there we found out that the insurance that I had through my work would not cover that hospital so we had to find a different one. And that's when the search started and we found Cleveland Clinic. The evaluations didn't start until much later though.
In the end of 2004, I had a follow-up appointment with Dr. Sexton and I talked to him about a cruise that I was going on in January 2005 and he told me that it was probably not the best idea to go since I was getting so sick. I think that it was an intern that told him that if I was going to be going through all this Tx stuff and continue to get sick, why not let me have one last vacation. Dr. Sexton made me promise that if anything were to go wrong on the cruise, I would be life flighted off of the cruise and taken to the nearest hospital (which would be in Florida) and once I was stabilized there, I would go to my clinic in Syracuse. I promised and then it was decided that I would go on probably my last vacation before things deteriorated even more. That was great news and that was the end of a rough year.
Thursday, February 28, 2008
The Big Move
After the wedding and all the excitement of the honey moon, it was time to sell our trailer so that we could buy a house in the Utica area. Nate was already staying up there with his parents and I wanted to get up there so bad to be with him. We were a married couple living 90 minutes apart. It wasn't fun. I was staying at the trailer packing and keeping an eye out for anyone who might want to buy it. We finally got someone interested in buying it but they didn't have enough money to put down a down payment and without a down payment, they couldn't buy it. We wanted to get rid of it so bad that we helped them with the down payment and the trailer was theirs! I was finally able to be with Nate again.
Initially, we lived with Nate's parents. I moved to the Utica area in September 2002 and all of our household belongings went into a storage shed because it would not all fit in Dale and Gina's house. We began looking for a house in November (or so) and had a couple in mind. The one that we really wanted to look at was sale pending so we couldn't look at it. We saw a few others from the outside and called on a few but the prices were outrageous. Then we found a little ranch style house that we decided to call on and look at even though the outside of that was not very appealing. We set up a meeting to look at the inside. We finally went to look at it and this is what we saw.....
When you walk in the front door, you walk into the dining room with a bar area that is attached to the kitchen. Straight ahead is the kitchen. The floor, fridge, stove, light fixtures, and counters all needed replacing. If you walk to the left when you come in the front door, there is a huge living room with a beautiful fire place. The carpet in the living room is really worn out and is really ugly. There are two huge windows in the living room that face out to the street and they are just one huge pane of glass, they do not open at all. There is a door over to the right when you walk in to the living room and that leads to the bathroom, kitchen, and basement door. The bathroom is very small. You have to squeeze past the linen closet and sink to get to the bathtub and toilet. You can literally shave, shower, and sh*t at the same time. I loved the linen closet though because it is huge and the tub is huge. The shower head is also pretty high up which is good because I'm 5'9". If you're back in the living room, and look opposite of the dining room, there is a small bedroom off to the right and then another one that is bigger just one door down. There is another bedroom across from that one. The basement is really big with the ceiling being a lot higher than most homes. The laundry is down there and there is a bar room. It is not a finished basement though and is pretty damp. The outside of the house has a tree blocking the dining room window and then bushes all along the front of the house. The house is painted pink with maroon trim (not the greatest selling point). There is a one car garage that is attached to the house. The front and back yards are HUGE compared to what some people have on our street.
The house was built by the original owner in 1949 and believe me, it looks like it hadn't been remodeled since then either. The owner passed some time ago and left it to his niece. It really looks like she destroyed the house. She wanted to sell it for $80,000. We are not very keen on this price with how much work the house needs and the real estate agent tells us that she probably will go lower. We go a lot lower and offer $65,000 and she accepts! The house is ours with all the work that needs to be done to it! We had the closing and we moved into the house on Valentine's Day 2003. We got all of your things out of storage and started making this house our new home.
Initially, we lived with Nate's parents. I moved to the Utica area in September 2002 and all of our household belongings went into a storage shed because it would not all fit in Dale and Gina's house. We began looking for a house in November (or so) and had a couple in mind. The one that we really wanted to look at was sale pending so we couldn't look at it. We saw a few others from the outside and called on a few but the prices were outrageous. Then we found a little ranch style house that we decided to call on and look at even though the outside of that was not very appealing. We set up a meeting to look at the inside. We finally went to look at it and this is what we saw.....
When you walk in the front door, you walk into the dining room with a bar area that is attached to the kitchen. Straight ahead is the kitchen. The floor, fridge, stove, light fixtures, and counters all needed replacing. If you walk to the left when you come in the front door, there is a huge living room with a beautiful fire place. The carpet in the living room is really worn out and is really ugly. There are two huge windows in the living room that face out to the street and they are just one huge pane of glass, they do not open at all. There is a door over to the right when you walk in to the living room and that leads to the bathroom, kitchen, and basement door. The bathroom is very small. You have to squeeze past the linen closet and sink to get to the bathtub and toilet. You can literally shave, shower, and sh*t at the same time. I loved the linen closet though because it is huge and the tub is huge. The shower head is also pretty high up which is good because I'm 5'9". If you're back in the living room, and look opposite of the dining room, there is a small bedroom off to the right and then another one that is bigger just one door down. There is another bedroom across from that one. The basement is really big with the ceiling being a lot higher than most homes. The laundry is down there and there is a bar room. It is not a finished basement though and is pretty damp. The outside of the house has a tree blocking the dining room window and then bushes all along the front of the house. The house is painted pink with maroon trim (not the greatest selling point). There is a one car garage that is attached to the house. The front and back yards are HUGE compared to what some people have on our street.
The house was built by the original owner in 1949 and believe me, it looks like it hadn't been remodeled since then either. The owner passed some time ago and left it to his niece. It really looks like she destroyed the house. She wanted to sell it for $80,000. We are not very keen on this price with how much work the house needs and the real estate agent tells us that she probably will go lower. We go a lot lower and offer $65,000 and she accepts! The house is ours with all the work that needs to be done to it! We had the closing and we moved into the house on Valentine's Day 2003. We got all of your things out of storage and started making this house our new home.
Monday, February 25, 2008
The Honey Moon
After the wedding, Nate and I left for Cape Cod, Massachusetts. We got on the road at about 6PM and had to stop somewhere along the way to stay the night. Most of the places that we were stopping at we fully booked. We finally found a place that had vacancy. It was not the greatest place in the world but it was somewhere to close our eyes and get some rest. We started back out in the morning and arrived in Cape Cod later that afternoon. We stayed at a bed and breakfast (which we had reserved ahead of time) instead of a hotel because we knew that it would be a lot cleaner. We basically had a whole apartment to ourselves. There was a kitchen, a bathroom, a huge closet, and a bedroom/living room. We also had a second story deck all to ourselves. It was really nice. The lady who owns the place made breakfast (fresh friut, muffins, yogurt, juice) the night before and would bring it up while we were out to dinner or something. It was all very good. They also had movies that we could borrow from them if we wanted to watch movies (which we didn't).
We were about 10 minutes away from many different beaches. That was the first time that I had ever been to the ocean!! The first beach that we went to was nice. It was a cloudy day and a little windy so we didn't stay long but we did walk on the beach, I at least put my feet in the ocean, and we got something to eat. When we sat down to eat, Nate had to get up and get ketchup for his fries and when he did, a bunch of seagles dive bombed his fries right in front of me!! It was hilarious. Most of his fries were gone! Throughout the week, we visited many different places. There were a lot of different beach houses along the roads with tons of stuff for sale. We stopped at a few of them. We went to Provincetown a few times. One of the times, we went on a whale watch (which I had also never done before) and we did see a few whales. Not many of them came very far out of the water though. It was still a great experience! On another day there, we went downtown and did a lot of sight seeing and visiting the little shops and restaurants. We also went to the Pilgrim Tower and museum where we had to walk hundreds of steps to get to the top. That was really a work out for me and my lungs! The view from the top was awesome though!! We also went on a little venture to find a light house and to take a tour of it. Nate is a big fan of light houses. We found one and that is the first time that either of us had been to a light house. We even got to go to the top where the light is. That was very cool. The view from up there was really a sight to see. You could see the ocean for miles and miles!! I reall hope to get to do this again some day.
In the time that we were there, we visited a lot of different restaurants and I don't think we really found any in particular that really impressed us. Nate was not impressed with the way that any of them cook steaks. He said that they were tough and had very little or no flavor. The little shops all around were very amazing. I don't think I have ever seen so many things for sale!! We went to a mall somewhere near there. It was pretty big and we found a few things for family and whoever, to bring home as gifts for them.
The one place that we wanted to go and never did was Martha's Vineyard. We did not find a schedule for the ferry to go there until like almost the last day that we were there. If we ever go again, I think I will book it online so that we can go. All in all, it was a great week! I definitely would go back and it would be a great place to take Brady some day.
We were about 10 minutes away from many different beaches. That was the first time that I had ever been to the ocean!! The first beach that we went to was nice. It was a cloudy day and a little windy so we didn't stay long but we did walk on the beach, I at least put my feet in the ocean, and we got something to eat. When we sat down to eat, Nate had to get up and get ketchup for his fries and when he did, a bunch of seagles dive bombed his fries right in front of me!! It was hilarious. Most of his fries were gone! Throughout the week, we visited many different places. There were a lot of different beach houses along the roads with tons of stuff for sale. We stopped at a few of them. We went to Provincetown a few times. One of the times, we went on a whale watch (which I had also never done before) and we did see a few whales. Not many of them came very far out of the water though. It was still a great experience! On another day there, we went downtown and did a lot of sight seeing and visiting the little shops and restaurants. We also went to the Pilgrim Tower and museum where we had to walk hundreds of steps to get to the top. That was really a work out for me and my lungs! The view from the top was awesome though!! We also went on a little venture to find a light house and to take a tour of it. Nate is a big fan of light houses. We found one and that is the first time that either of us had been to a light house. We even got to go to the top where the light is. That was very cool. The view from up there was really a sight to see. You could see the ocean for miles and miles!! I reall hope to get to do this again some day.
In the time that we were there, we visited a lot of different restaurants and I don't think we really found any in particular that really impressed us. Nate was not impressed with the way that any of them cook steaks. He said that they were tough and had very little or no flavor. The little shops all around were very amazing. I don't think I have ever seen so many things for sale!! We went to a mall somewhere near there. It was pretty big and we found a few things for family and whoever, to bring home as gifts for them.
The one place that we wanted to go and never did was Martha's Vineyard. We did not find a schedule for the ferry to go there until like almost the last day that we were there. If we ever go again, I think I will book it online so that we can go. All in all, it was a great week! I definitely would go back and it would be a great place to take Brady some day.
Wednesday, February 20, 2008
July 27, 2002
July 27, 2002, that is the day that I got married. The morning started out like any other morning but I knew that it was going to be a day like no other. The plans had all been made, the day had come, and I was going to walk down that aisle at about 11:30AM. I took a shower and got dressed in the morning. I had to meet up with the girls to go get our hair done. We went a little bit down the road from my house and we got our hair done, two girls at a time. I was one of the last ones so that we could make sure that my hair was going to stay up. My hair was pulled back and then was curled and bobby pins were placed to keep the curls in place. My veil was put on my head just to make sure that it looked okay with this hair-do would work with the veil that I chose. It was perfect!!! When we were all done, we went to the church to put on our dresses and get ready. My bridesmaids had to put on their makeup but I don't wear it because I never have. The glow that I had on that day was all natural!
As I was getting into my gown, my Mom looked at me and told me that she wasn't ready for this. I told her that it was too bad because I was walking down that aisle in about 30 minutes. I got my dress on and then someone put my veil on for me and made sure it was in place and I was about ready. I had people stopping into the dressing room to see how things were going and some of them started crying and made me cry. That was okay though because I didn't have any makeup to ruin. The time was approaching and we were ready to get lined up to start the wedding procession. It was almost time for me to become a wife.
First, our parents (and my brother) went down the aisle. My Mom and Gina lit the unity candles and then went back to the guys and took their seats. My brother went back to the back of the church because he was walking me down the aisle. The music of "So Much in Love" by All-4-One started playing and Barb and Larry were the first ones down the aisle. Then it was Beth and Greg, followed by Kate and Joe, followed by Bekah and Shane. Then the little ones, Cole and Christine went down the aisle. We let the music get to a certain part and then my brother and I met at the pews. Once the line "as we walk down the aisle" came on, my brother and I started down the aisle. Everyone stood up and watched me take that walk that every girl hopes and waits for.
Once I got up to the altar, Nate took my hand and the music stopped. Pastor Dave did the intorduction to the ceremony. He asked if anyone objected to the marriage and obviously no one did. That's when the readings for the ceremony started. He read a few scriptures from the bible and then we said our vows. After the vows, he asked for the rings from Shane. We heard some wrinkling noises and wondered what he had. Instead of handing Pastor Dave our wedding rings, he handed him some rings pops. The pastor held them up for everyone to see and everyone in the church busted out laughing. It was so funny! He gave the ring pops back to Shane and Shane gave him the real rings. We exchanged the rings, a few other things were said, we lit the unity candle, and then we were pronounced husband and wife at 12PM sharp. I remember this because the noon fire wistle went off. We were right down the road from the fire hall. We had our wedding kiss, the music "Prayer" by Charlotte Church started playing, and we walked down the aisle and out of the church. The ceremony was over and we were now husband and wife.
We greeted people outside the church. I had to leave for a minute and change my head piece because when people were hugging me, they kept pulling on my veil. I took the veil off and put on a tiara. I went back outside and finished greeting people. Uncle Duane then did pictures of the wedding party outside because it was a nice day and there was a water fountain that I wanted our pictures done in front of. The pictures turned out beautiful. People started leaving and going to the VFW for the reception and we went to our car which someone decorated while we were getting married. We went around a huge block just so we could and then we went to the VFW where everyone was waiting. The wedding party lined up outside the doors that we were goin to walk through and the DJ announced us as we came in. When Cole and Christine walked in, Cole went straight for the food. That was a moment to remember. Nate and I were announced as husband and wife for the first time in public and it was a great feeling for me.
Now was the time to do our dances. Our song that we danced to was "Forever" originally by the Beach Boys but this version was sung by John Stamos (Uncle Jesse on Full House). I absolutely loved that song and thought it was perfect for us to dance to. It took us forever to find but the DJ founf it for us! After our dance, I danced with my brother to "Through The Years" by Kenny Rogers and Nate danced with his Mom to "Song for Mama" by Boys II Men. There were a few other dances and then we ate. The food was excellent because it was all home made (for the most part anyway). We had cold meat sandwiches (bought from a store), pasta (made by my Aunt Sally), and then some salads and other things made by friends and family. A lot of people said that it was the best food that they ever had at a wedding. We had no alcohol allowed at the reception because we didn't want people getting drunk and I couldn't stand the smell of alcohol anyway. There was also no smoking allowed inside because of my lung condition. It all went really well. After we all ate we did some dancing. We did the tossing of the bouquet and guarder, both of which were special bought so that we could keep our original ones. One of my cousins caught the bouquet and Nate's brother caught the guarder. We then cut the cake. There was a lot of it too. We gave each other a piece of cake and it was all "nice, nice." We didn't want the cake ending up all over ouselves and I didn't want the possibility of it staining my dress. It all went really well.
When the reception was over, the guys took off in their tuxes and went go cart racing. I didn't go but I saw pictures....they were crazy! We went back to the trailer and Larry and Mandy met us there. We opened gifts and then we left for our honey moon! We were on our way to Cape Cod, Massachusetts. The day couldn't have been more perfect!
I just want to add on a little side note to let everyone know that it is absolutely possibe to have a wedding like this if you don't have a lot of money. We did it all for $3,000! There are a lot of things that were in the wedding that I left out too. It's just too much to fit in all of the details!
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