Friday, December 5, 2008

Mid 2005

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???

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.

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.

Friday, October 17, 2008


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.

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.

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.

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!

Monday, February 18, 2008

Things leading up to the Big Day!

There was so much to do for the wedding. We actually bought our rings a lot earlier so that was out of the way and then I started looking for my wedding dress in December 2001. I took a friend, Mandy, with me to look for the perfect dress. I had a little portfolio of dresses that I had in mind along with the bridesmaid dresses too. We went to a little bridal shop in Groton, NY and started looking. I tried on about four dresses which were all too small so you couldn't get the full picture and a lot of them were white, and since I was pale, the white dresses washed me out even more. We pulled a cream colored one off the rack and I tried it on. This one was also too small but once I had it on, Mandy started crying and saying that this was the one for me. I looked in the mirror and started crying too. This was the dress that I was going to wear on my wedding day. It was perfect!! It was off white/cream, had some embroidery detail on the corset style bodice (vines and flowers), some bead work, the dress was sleeveless (with two straps that came over the shoulders), a little bit of a bell for the dress, and the train was lace with the same design as the bodice and was about three feet long. There was also a shawl to go around the shoulders which also had the same flower design. It was the dress of my dreams. We started looking at head pieces to match it and the first one we took off the rack was a perfect match. It was a circle headpiece made of flowers and beads (like the dress) and had the veil hanging off of the back of it. It was perfect!! Now that we found the dress, there was more to do.

I was showing the lady at the dress shop some of the pictures of the dresses that I liked for the bridesmaids. There was one that I really liked and showed that to her. She surprised me by saying that she had that exact dress in the store. I looked at the dress and it was perfect. It was nice and simple like my wedding dress. The top of the dress was silk and had over the shoulder straps like mine and the bottom was a non-wrinkle material so the girls didn't have to worry about their dress being wrinkled. There was no design or anything on the dresses except for a little clip in the back that had 4 roses on it with a little train falling from it. My maid of honor wore a butter yellow dress and the other bridesmaids were in a pastel blue. They were beautiful!! The only dresses I had left to find were my Mom's dress and a dress for the flower girl. Yes, I said that I had to find my Mom's dress. I was afraid of what she would pick for herself (yes she knows it and sorry Mom). I found one for almost $100 and it was perfect for her. Now the only one left was the flower girl. My younger sisters fiance had a daughter and with his permission and the permission of her mother, I asked for her to be my flower girl. They both said yes but the only problem was they couldn't afford a dress. I couldn't really afford another dress either so I looked at department stores and other places. I kept finding either ones that I didn't like or ones that were too expensive. I went to Old Navy for something one day and what do you know? I found the perfect little thing for her to wear. It matched my dress too. It was cream and there was a little top that had spaghetti straps and buttoned in the back. There was a little skirt that matched it. Both the top and the skirt had some embroidery on it for decoration and it was perfect! This little flower girl dress cost me a whole $10!!!! It was also something that she could wear again and again.

The guys tuxes were really not hard to find. We just needed to find vests that would match the color of the girls dresses and we did. We got the Ring Bearer tux free with the rental of all the other tuxes. Isn't it funny how the bride is allowed to see the tuxes but the groom is not allowed to see the dress? It's so fun to keep the guy in suspense!!

Things were moving absolutely smoothly. Here are the people who were in our wedding: Bride and Groom; Patricia (me) and Nathanial, Maid of Honor and Best Man; Rebekah (best friend) and Shane (Nate's brother), Bridesmaids; Barbara (my older sister), Katherine (my younger sister), and Elizabeth (best friend), Groomsmen; Larry (cousin), Greg (Nate's friend from school), and Joe (Nate's friend from school); and Flower Girl and Ring Bearer; Christine (my sister's fiancee's daughter) and Cole (Larry's son). My Mom and Nate's Mom; Joan and Gina lit the Unity candles and my brother and Nate's father; Harlan and Dale, walked them down the isle. My brother played another role in walking me down the isle since our Dad was not around. That was the line-up and it was a perfect one! I don't think that I would have chose anyone different.

I was planning the whole wedding (with Nate's input here and there). We chose the church that I frequented with my Aunt since I was little. Even though I was not an active member of the church, the pastor agreed to let us have the wedding there. It was also the church in which my Grandma got married to my step-Grandpa in the early 90's. Pastor Dave had us go through some pre-marital counseling. It was part ofthe cost of having the wedding there and something that he always had people do before he married them. We were supposed to have 6 sessions with him and after the 3rd one he said that he trusted in our marriage and we did not have to go back for the other three. Boy was that a good feeling!!

The church was set, now we had to find some place to have the reception. We didn't want anything too fancy or too expensive. We went to the Dryden VFW which was right up the road to see if they had July 27 open and they did. That was set, the reception would be at the VFW! We found the DJ by a recommendation from someone we asked. The person we asked was busy that day so they told us about a DJ in Ithaca and that he wasn't that expensive. We met with him and that was set. We just had to tell him what songs we wanted, the names of the bridal party, and were and when it was going to be. There was a lady we knew who owned a bakery and we got them to do the cake for us (for a discounted price). Now we had to find a photographer. I though about it and knew that Nate's Uncle Duane takes some good pictures. We asked him to do the pictures and he agreed. It was his wedding gift to us so the pictures were free!!!! We met with a florist to do the flowers and for the little amount of flowers that we wanted, the price was ridiculous. I was not much of a crafter but I decided that I would go to a craft store and do the flowers myself. I got all the stuff to do my bouquet (two of them so I could toss one and keep my original one), the flowers for the girls, and some arrangements for the pews in the church, the ones to decorate the cake, and some for the tables at the reception. Instead of paying a florist over $700 for all of this, I paid about $150 for everything that I did myself.

Our table decorations were nothing big. We covered the tables with table cloths. Some tables were pale blue and some were light yellow. There were just candle holders with ribbons attached and a long white candle in the holder. We had a string of white flowers going across the head table with two oil lamps (instead of candles). We decorated everything the night before after the rehearsal. That is also where we had our rehearsal dinner which was pizza and wings!! It was a fun night.

At the rehearsal, there were a people there who were not in the wedding but we told people that they could come if they wanted to. There were also other family members there who had to learn what songs to put on when because we were not having the traditional organ music because I can't stand the sound of an organ. We were all laughing and fooling around, while getting other stuff done, and it was a great time. When Nate and I got up to the altar, the pastor jokingly told me that I still had time to back out of the wedding if I wanted to. We all laughed and I told him that I was sure I wanted to go ahead with it the next day. After the rehearsal was done, we headed to the VFW to decorate and eat our pizza and wings. It's so fun doing stuff yourself and not having to pay someone to do it. Plus it's an experience that you don't forget!

When we were all done with the decorations, Nate and the guys went out and I went back home. Nate stayed somewhere else that night and I think a couple of the girls stayed with me at the trailer. The day before the wedding was done and the next day I would be married with a different last name!

Sunday, February 17, 2008

Our Years in the Trailer

As I mentioned in another post, my and Nate's first home was a mobile home. We bought the trailer in 1999 and lived there until 2002. Our trailer wasn't very big but it was big enough for the two of us. We had a friend of mine live with us for a while when she had no place to stay. My sister Kate, her fiance at the time, and her kids lived with us for a little while at one time too. When they were with us it was a little crowded but it wasn't too bad. I also met some people in the trailer park who I became friends with and there were also a few relatives who lived in the trailer park too. I lived only about 5 minutes from TC3 which is where I was going to college. It was an easy travel for me!! That trailer is where I started getting worse with my Cystic Fibrosis (it had nothing to do with the trailer though). That is where I started having IV's at home more often, more hospital visits, had my first episode of coughing up blood, and where I started sleeping with oxygen. That is also where we lived when I had my first medport implanted so I didn't have to have PICC lines or peripheral IV's anymore. That was really nice!

One of my closest friends in that trailer park was Tammy. After about a year of living there, she realized that she knew me when I was a lot younger. Her friend is the girl who lived in the house behind the apartment that we lived in when I was little. Her friend is the one who gave me those presents after I got out of the hospital and it was my birthday. Well, Tammy had also been around a lot when I lived there. She knew me when I was little. It really is a small world!

This is also the home where we got our doggy, Sasha. She is a Rotty and she was an absolute joy for us. We taught her so many things and she was like our baby. Sadly, we had to get rid of her in 2006 because I couldn't stand all of the pet dander and the smell that she gave off. It made it harder for me to breathe and it was already hard enough on me. We have not had another pet since and don't know when and if we'll get another one.

Nate moved out of the trailer in February of 2002 and I stayed there to finish school. He went to his hometown to stay with his parents because his job took him there and he thought that would be a better life for us. As soon as I finished school, I finished planning the wedding, the wedding took place in July, and then we started trying to sell the trailer so we could buy another home in the area that his parents live. We were married on July 27, 2002 (which I'll post about later), we sold the trailer in August, and we started looking for a house in what would be our new hometown (our at least my new one and Nate's old one). This would be the beginning of our new life together.

Thursday, February 7, 2008

The College Years

Right after high school I moved out of Craig and Rhonda's and into an apartment of my own. That July, Nate moved out of his parent's house and in with me. Also that month, I started my very first job at Valu Home Center as a cashier/sales associate. I very quickly worked my way up to counting inventory and checking in new shipments. I got a raise a little while after I started. In August 1999 I started college classes at Tompkins Cortland Community College (TC3) and was determined to finish with an Associates Degree in Business Administration. Since I wasn't sure how things were going to go, I started out part time with my classes and still worked part time also. Things were going great! Nate and I then started looking to buy our first home together (a mobile home). He proposed to me in November 1999 while we were at home and I accepted. We waited until Thanksgiving to tell almost everyone. My sister Kate already knew because she was there when he proposed. We were a very busy couple! We got approved to buy a mobile home and we moved in December 1999 from Homer to Dryden. This is also about the same time that I had to change doctors again. I was no longer pediatric, I had to start seeing the adult CF doctor, Dr. Sexton. We were now living in the same town where I was going to school. I quit my job at the hardware store and started working at the local pizzeria so that I didn't have to travel so far to go to work. Eventually things didn't work out at the pizzeria, the owner and I didn't see eye to eye, so I quit. That same day, I filled out an application at Mobil gas station and almost immediately had an interview. I went to the interview and I was hired. The job wasn't too bad and the manager was more than willing to work with my school schedule.

I was working at Mobil full time and then also started my classes back up after the winter break and they were full time too. So, I basically worked and went to school. It wasn't too bad at first. I wasn't really in the hospital all that much. Living in the mobile home is the first place where I coughed up blood. That was scary when it first happened!! Dr. Sexton told me that it was really nothing to worry about unless is was more than 1/4 cup. After the blood happened, that's when my lungs started getting worse. I had to start wearing oxygen at night while I was sleeping too because my O2 levels would drop while I was sleeping. Instead of staying in the hospital for long periods of time, I started doing IV antibiotics more frequently at home. It was easier this way so I could continue working and going to school. Toward the end of 2000, I was still continuing on with my classes and working at Mobil but I was now also working at the Video Shop on the weekends. That job was awesome and the owners, Mike and Gina, were very nice. I have not seen Mike in quite some time and I miss him.

I started going to the doctors office more frequently as time went on. I had more espisodes of coughing up blood and had IV treatments more frequently, so in August 2001, I had a mediport implanted in my chest. This made it so that I didn't have to get peripheral IV's anymore. It was much more convient to do IV antibiotics this way. Around December of 2001, Nate and I started planning the wedding on top of everything else that was going on. We had even bought our wedding rings a little while before that. We didn't want to get married until I was done with school because I was getting financial aid and if we would have gotten married, they would have gone by his income and my financial aid would be gone! I was planning to graduate college in May 2002. In my last semester of college, it started to seem hopeless that I would graduate on time. They had my degree wrong. It was still some sort of Business degree but it wasn't Business Administration like I wanted. I had to switch some of my last semester classes right before we began the semester, and that worked out fine. I was then told that I needed to take some sort of Physical Education class which I knew that I couldn't do. I got a doctor note saying that I couldn't be in PE when I was in high school and they weren't going to let me do it now either. I got away with taking Drug Studies. There was one time that we took a test in that class and I noticed on one of the multiple choice questions that the right answer wasn't there. I pointed it out to the professor while we were taking the test and he had to look it up in the book. I was right!! People thought I was crazy to question the professor, but I got 4 extra points on my exam for pointing out his mistake! Woohooooo!!

About three weeks before college graduation, graduating really seemed impossible. I started coughing up blood again and this time is was a large quantity. I had to have surgery on my lung to stop the bleeding. Of course that would cause me to be behind on my college work. I had someone picking it up and bringing it to me though so I could try to keep up. I had a final report to do with a group in one class, a final exam for American History, a final exam for College Algebra and Triganometry, and a few other things that I needed to finish before the end of classes so that I could graduate. The day after I was released from the hospital was about a week before the end of classes so I went right back to class without taking a break at home. The Professors thought that I was crazy but I told them that I couldn't put classes off and graduate in August because I had a wedding to finish planning. My wedding, which was taking place on July 27, 2002. I caught up on all of my work and took all of my finals on time. I think that I got high B's or A's on most of them, which again amazed the Professors. On my Algebra and Trig final, the Professor told me to come in the next day and she would have my final graded in case I needed to take it again for a better grade. I went into her office the day after the final and she told me that I was fine. She handed me my exam and I got a 105/100. I got almost everything right and the bonuses right!! I still have that exam as a souvenir!! So, I beat the odds again and graduated college (.5 below honors) with an Associate's Degree in Business Administration in May 2002. Now it was on to finishing the plans for the wedding!!

Monday, February 4, 2008

My High School Years

I spent my high school years at three different schools. I started my 9th grade year at Groton High school and I made some friends, but nothing like my previous schools. The thing that shocked me most was that I was placed in a 10th grade French class. I was more advanced than the 9th grade students there because I had started the foreign language classes before them. I was in a restricted gym class which is where I met my best friend from that school. She was in there because of her CP. We became attached to each other and I spent a lot of time at her house with her Mom, Stepdad, and two brothers. I think that this is the only friend/family from Groton that I still have contact with. I go to her parent's house kind of frequently even though they live 90 minutes from me. I spent New Years with them this year. Anyway, towards the middle of my 9th grade year, we moved for some reason that I can't remember and I was then in Cortland school. I absolutely hated that school and don't have much to say about it. I met some good friends, even dated one person (also met him in a restricted gym class), and there was one person who was there from a previous school that I went to. She and I talked a little, but not much. I continued to be in band at this school but felt that I didn't really belong no matter how hard I tried. The band teacher tried failing me for not marching/playing my flute in the Memorial Day parade. Um hello....I have Cystic Fibrosis which is a lung problem!!!! I couldn't play my flute and march at the same time. I got a doctor's note and he passed me.

I guess that I did okay grade wise in Cortland, but as I mentioned it just didn't feel like home. Toward the end of the school year, there was a murder on school grounds and I told my Mom that I no longer wanted to attend this school. She listened and we moved when she found another job. I started my 10th grade year nice and fresh at Homer High School. I fit in rather quickly and absolutely loved this school. It was easy to explain my medical condition my friends and I even laughed at some of the stuff that happened to me. Not too far into my first year at this school, I was admitted to the hospital for pneumonia. I got so many get well wishes from friends and people who I didn't even know. I got better rather quickly and was right back into my new school. Another thing that I liked was that I was again advanced in French and was in an 11th grade French class. Also, some of the teachers that I had, I had more than once. All three years of French, I had the same teacher, Mrs. Agate. She is an absolutely wonderful person!! You'll hear more about her later. I had Mr. Valentine for Global Studies and then again for Economics. I had Mr. Cortese for American History and then again for Government. I had Mrs. Nobel for Proof (Math) and Pre-Calculus I and II. It was nice to have the same teachers because I didn't have to explain my Cystic Fibrosis all over again.

My gym classes were not as they were in the other schools because Homer did not have one like that. My 10th grade year was spent in a regular gym class, not doing everything that they did. Toward the middle of the year, I just started walking the track or whatever I could so that I was still in a gym class. We moved within the school district and I ended up living just down the road from a girl who was a year behind me. Beth and I became friends really fast although we are complete opposites. I used her for her indoor pool and she used me for my trampoline (ongoing joke that we have). We were inseperable. That is also the year that I turned 16. My friends decided that it would be great to send me some balloons and flowers to the school and to post my picture up all over the place saying that it was my Sweet 16. I had people telling me happy birthday for the rest of the year (my birthday is in the beginning of June). In 11th grade I started being hospitalized more. I had to drop a few courses because I was taken out of school for 3 months due to a really bad case of pneumonia. I had a new band teacher (the old one had left) and I did not like him at all. I dropped one of my best subjects and the one that I enjoyed the most, band. I did continue playing my flute though. I also had to drop Chemistry because I couldn't do the labs at home. Of course, I was also taken out of gym. First, I couldn't do it because I was not there and second, I couldn't do it because of my compromised lungs and swollen spleen. The doctors were afraid that I would get hit in the abdomen and it would rupture my spleen. Other kids were complaining that I didn't have to take gym class. All I heard for the rest of the year was "You can't graduate without a gym class." My response was, "You can if you have a medical condition that won't permit you to be in one."

So, what did I do to get my school work done? No tutor for me. I had an excellent teacher who brought my classwork, homework, and tests to me and when I was finished, she took them all back to the school. Who was this??? Mrs. Agate, my French teacher of course. She lived right up the road from me and we had a pretty close relationship since this was the second year that I was in her class. She was not able to help with much of my work other than the French so I pretty did everything on my own, self-taught. I was in Course III Math that year, which I believe was Algebra and Trig. The teacher that I had for that course told me that I wouldn't pass the regents exam because I missed too much school. I told him that I had done fine on my work and tests while I was out so I still wanted to take it. I did well in all of my courses that year. I had been out from December to the end of March (I think) and although I did well on my own, I was glad to be back in my classes and around my friends. I caught up in all of my classes and took all of the final exams and regents on time. So, how did I do on the Course III Regents Exam? I got an 86! I admit that I would have done better had I not been out for 3 months, but come 86 is well above passing. I had been told that I would have to repeat the 11th grade, but no way was I going to let that happen. Oh, I never went back to a single gym class that year either. I had study hall instead. Prom time came around and I wasn't sure if i was going to go because although I had a lot of guy friends, I had no boyfriend and didn't know if I would ask any of my guy friends. My friends asked on of my guy friends for me. His name is Kellen and he was in the 9th grade at the time. I know that it's kind of odd to take a Freshman but he was a friend and my friends thought that it would be fun. He went with me and it was a blast!! I have a lot of great pictures from that night! I passed everything and was on to my Senior Year!!!

That summer (1998) was a summer that I will remember forever. That is when I met Nate. I already knew his family, in fact, his Uncle is married to my Aunt. Even before they were married, I knew his brother, aunts, uncles, cousins, and grandparents. I'm not really sure when I met his parents but I already knew them too. He had finished school out in Cleveland and was in the area when his family was throwing their yearly bonfire at his Grandparents house. I was there like I always was. I normally spent a little bit of time at my Aunts house during the summer. Nate was there this time and he was working on a truck. I was outside and started asking him if he knew what he was doing. He got a kick out of it. I am 3 years younger than him. We saw each other that night at the bonfire and kind of hit things off. We stayed up talking until 4AM. I thought that would be it since he lived about 90 minutes away from me. That wasn't it though. He called my Aunt and asked for my number. She called me to make sure that it was okay and I told her yes. We talked all the time since then and he came down to see me on the weekends.

During my Senior year, I continued to get sick but I don't think it was anything like the year before. I had a really full course load because I wanted to stay busy. That year I took, PreCalc I and II, Health, French V, Driver's Ed, English, Government, Economics, and Microsoft Office. Believe it or not, I still had time for Study Hall in there somewhere. It was nice because I had Study Hall with my little sister who was in 9th grade at the time. Most people would hate being in a class with a younger sibling, but I liked it. It gave me someone to talk to.

November of that year, my Mom and I were not seeing eye to eye so I moved in with Beth and her parents. Nate helped me move my things and I lived with them for about 7 months. They had a nice big house and Beth was the only child left living at home. I had to follow their rules and I also paid them rent out of my SSI check that I got every month. Whatever I wanted that they normally wouldn't buy, I bought myself. I spent Christmas with them and got a few gifts from them. Nate was the winner with getting me my first set of gold and diamond earings. He also stuck some silk red roses in my stocking. It was a great Christmas. I was also learning to drive that year, that's why I took Driver's Ed. I wanted to learn more than was being taught to me at home. I had bought a car from Craig and Rhonda (Beth's parents) and got my own insurance. I did really well in Driver's Ed and took my road test after I finished the class. I passed the road test on my first try!!!! Since I took the Driver's Ed class, I got a reduction in my insurance and I was able to drive after dusk before I was 18!

The Prom was shortly after I passed my test. Of course, I already knew who was going with me, Nate. He rented a tux and he bought me a nice dress. He got me a wrist corsage that I still have because they are silk flowers. That's when we had our first "professional" pictures taken together. That night was really fun. Kellen, the guy who went with me to my Junior Prom, was also there again. He went with one of my friends this time. This was all ending my Sennior year that the teachers thought would be my Junior year again. I'm so glad that I don't listen to people sometimes. I had my graduation party at Craig and Rhonda's before I even graduated because I knew that I was graduating. Classes and tests ended and even though it's great to graduate, it's sad to leave friends behind. We had our graduation rehearsal where we got our caps and gowns and ropes for Honor Society, Graduating with honors, and whatever else. They were calling names for the gold ropes (graduating with honors) and I heard "Patricia Caulkins." I was completely shocked. My grades had fallen a little so I didn't think that it was even possible that I graduated with honors but I did. My overall high school average was like a 93. Boy was that a defining moment in proving some of my teachers wrong!!

Graduation day was awesome!!! All of my classmates dressed in our caps and gowns, listening to the speaches, and waiting to walk across the stage. I was so awe struck, that I didn't even hear that I had received two scholarships! It was advised that I wait to go to college because of the problems that I was having but knowing that I got 2 scholarships, it was a sign to me that I had to go now. I went on to Tompkins Cortland Community College in the fall of 1999. I was the first, and eventually the only, child out of me and my siblings to even graduate high school and I was going on to college!!!

Wednesday, January 30, 2008

My Grade School Years

I don't remember my first day of school, or all the friends I had, or everything that happened during my school years. There is definitely one thing that sticks out to me though....the very first time that I can remember being sick and in the hospital. I was 6 years old and was in 1st grade and I had some really bad belly pain. I had to be taken to the hospital because with Cystic Fibrosis, who knows what is happening. I don't remember all the tests they did to find out what it was or exactly how many days I was in, but what I do know is that it was a bowel obstruction and I was scared. At 6 years old, hearing the doctors say that if it didn't correct on it's own, I would need surgery, is horrible. I think that I remember this so vividly because I was in the hospital with all of this happening and it was the day before my birthday. My obstruction calmed down on it's own and I was released from the hospital on my birthday I believe. I remember getting home and one of my neighbors was waiting for me with some presents. She was probably in middle or high school at the time so she was older than me. I even remember what she gave me.....a Teddy Bear pin and a green necklace (both of which I no longer have). I would later be contected to this girl in another way....that will be a later blog.

After that school year, we moved. I started at a new school and had to make all new friends. I remember these people because I went to that school until I was in the 5th grade. All of my friends and teachers learned of my condition, either through me or my family, and no one really even in they were still my friends even though I was sick. I wasn't that sick in elementary school although I still missed school from time to time because of having to go see Dr. Swender for my Cystic Fibrosis. When I was in Lansing School, I learned that a girl who I was friends with in Kindergarten was also in this school. Her name was Bekah and in the 3rd grade, we found each other again. We have been friends practically all of our lives and her family is my family.....I have probably spent as much time with them in my younger summer years as I did with my family. We were very close friends and right after our 5th grade year, I moved again.

I made new friends at Southern Cayuga school district and had to explain everything about my CF to people all over again. They didn't seem to mind either. To some people, I was known as the sick girl but that didn't bother me at all. I knew that I was sick and I just had to deal with it. To me, it was my normal. Somewhere around in this time, my doctor changed from Dr. Swender to Dr. Anbar and getting used to a new doctor was hard for me. I'm not saying that he was a mean doctor or anything like that, he was great. I just didn't have that special bond with him that I had with Dr. Swender. At some point around this time, I ended up in the hospital for a flare up....a term that CFers use for their lungs not doing so well at any certain point in time. When I was in that time, I met a girl named Jodi. We exchanged addresses and wrote back and forth to each other for a few years. We have since lost contact. Anyway, going to this school is one of the best things that had ever happened. I made a lot of friends and I excelled at a lot of things. My band teacher was impressed with my flute playing, especially with my compromised lungs. That school is where I joined FFA (Future Farmers of America). My older sister and brother also joined. Our Mom was a farmer for many years and we had begun helping her on the farms that she worked on which is probably why we didn't last long.

We lived in this one town where there is almost nothing and it was pretty much in the middle of nowhere. There were a lot of kids around the same ages as all of us though. The main kids that we hung out with were the Shiels boys. We would go through our back yard, through a field, across a crick, and into their back yard. They were the closest ones to us and it was fun having friends so close by when there is nothing else around. Our yard was the neighborhood yard for all of the kids to get together and play football or soccer. Of course, with my lungs and how frail I was, I didn't play. I was normally watching or sitting inside doing my school work. We were there through half of my 7th grade year and then we moved again. Back to Lansing school we went for the rest of the year. It wasn't the same. Bekah was no longer there, she had moved to Trumansburg. We still kept in contact and I still went to her house during the summer. I still had friends at the school but I just didn't fit in like I used to....was it because I was sicker than I was before? I don't know. It just didn't feel like home anymore. At the end of 7th grade, it was back to Southern Cayuga and it was great!

I had all the same friends, maybe even more. I had taken 10 weeks of French in 7th grade and did well in it so I continued it in my eighth grade year at Southern Cayuga. I excelled in French and Math that year......99's and 100's all the way across the report card. I wanted to move up in math but for some reason I wasn't allowed. I continued to play my flute in the band and I even tried out for 8th grade basketball with encouragement from my friends, and during tryouts, I had to stop because I just couldn't seem to manage it. That was the year that I also made it to the spelling bee and on my second word, I was out. I spelled bungalow's one of those things that you always remember and always remember how to spell it from then on. At the end of that school year, we left again. I still keep in touch with Alicia and Julie (two of my friends from there) but that's about it. I would love to get back in touch with some others to see what they are up to but don't know how to find them.

Monday, January 28, 2008

My early years.

Now most of this I was told because I cannot remember when I was a toddler. At about the age of 2 1/2 I had a bowel obstruction and was admitted to the hospital. The obstruction was not passing on it's own so I had to have surgery. When the doctors opened me up, everything settled. The doctors then decided to take out my appendix so that there was no possibility that anything would ever go wrong with that. My Mom has told me stories about that hospital visit. I had feeding tubes and whatever else. I was deathly scared of E.T. when I was little and there were people dressed as characters going around the hospital and one was dressed as E.T. When that person came into my room I was so scared that the feeding tube came flying out. E.T. left the room and a monkey came in and I said "Look Mommy, Monkey." Or something like that anyway. I was all happy. A nurse came into my room to replace the tube and my Mom told her that it wasn't necessary but she insisted. Soon after the nurse put it back in, the doctor said that it could come out because I was going home. Go figure!!!

My Mom was great! She was taking care of three toddlers with one being really sick....I can't imagine. She had to constantly change my diapers because I would poop about 10 times a day. Some idiot thought that I always had crappy diapers because my Mom never changed me and she turned my Mom in to CPS. Of course CPS found nothing wrong and my Mom went back to her everyday duties of being a loving Mom. I would love to have come face to face with this person as I got older and show her that my Mom did absolutely nothing wrong. Other than these instances, there wasn't a whole lot that happened in my toddler years. My serious problems would start much later.

Being diagnosed with Cystic Fibrosis

When I was born I had meconium ileus. This is the tar-like stools that come out of all babies when they are born.....mine was backed up in my intestines. My Mom didn't know it then, but later I would be diagnosed with Cystic Fibrosis. Because of having this backed up in my intestines, I had to have surgery right after I was born and the doctors told my Mom that I had a 5% chance of living. My Mom wanted to see me but one of the nurses wouldn't let her because she said that I was all black and blue and my belly was distended (swollen) and that she wouldn't want me. My Mom demanded that the nurse bring me to my Mom. Finally, my Mom got to see me and she fell in love with me right from that moment on. The surgery went fine and I was in the hospital for a little while before my Mom got to take me home. I had a few problems following that and even though we didn't know that the CF gene ran in our family (it has to for a baby to be born with it), I was tested for Cystic Fibrosis 3 months after birth. That test came back negative saying that I didn't have the disease but I continued to exhibit CF symptoms. So, at 6 months after birth, I was tested again. This time the test was Mom was told that I have Cystic Fibrosis and that the average life span for a CF patient was 12 years old at the time. I would likely never make it past middle school. I have a brother and a sister who were born ahead of me and they do not have CF. I have two sisters who are half sisters and they also do not have CF. My Mom and Dad both carry the CF gene (and didn't know it) and I was the lucky one who received one defective CF gene from each parent, which made me have the disease Cystic Fibrosis. I am now 26 years old and the average life span of a CF patient is 35.1 years at this moment.