Hello World!
My July has been crazy busy! I love it, don't get me wrong. I haven't had this many things planned in a long time. I feel like a real person with a life again. Its nice. A little chaotic sometimes but nice.
My health is stable at the moment. I couldn't ask for more! I made it an entire month with dropping any lung function! I actually went up 1% haha. Thats awesome for me. I usually do a roller coaster type deal, down one month, up the next, then back down. I finally managed to hit a straightaway. I'm hoping to stay on this ride! Since starting my increased tube feeds I do think I've gained weight, although I've been to nervous to actual step on a scale. But I feel fatter, haha. I think the increased feedings is some how stimulating my appetite even though my stomach is pretty full with these feedings. But I find myself craving some foods again. I LOVE IT!!! I actually ate some chips, almost a whole bag today! So I can't complain about my health, right now its doing good! Well, decent, haha cause lets face it 90lbs and 25% lung function isn't really GOOD. Haha, but stable and I will take that!
In other Jessi news I am a total pro at driving the boat!! I finally got the hang of driving and a friend showed me how to pull people on a tube and water skis. Its awesome. I will say my docking is still terrible but whatevs! I can drive a car but I can't parallel park. Who needs it! Haha. I went swimming... kind of.... for the first time in, maybe 4, years. It was exhilarating! Although I did manage to work myself into a coughing fit which lead to puking while in the water. That was super cute in front of my friends, haha. O CF thank you for always giving me a story to tell.
Right now I'm planning a couple Bridal Showers. One for one of my Best Friends and One for my future Sister-in-Law. The showers fall back-to-back. One this coming weekend and one next. My brain is going to explode with all this wedding and bridal stuff. And I'm not even getting married, haha. But I'm very excited and happy for both! The Showers will be amazing! I need my good health to last until at least October 2nd. I need/want to get through both these weddings feeling good. I'm hoping I feel well enough to walk down both aisles, I'm a bridesmaid in both, O2 free. Cause lets face facts, an ugly red backpack carry O2 and tubing are NOT cute in a nice dress and heels. So CF please... help me out this one time, be nice for the next few months. I would really appreciate it!
Breathe Easy
Live Life then Give Life, Please be an Organ Donor.
Wednesday, July 27, 2011
Tuesday, July 19, 2011
Simple Things
Hello World!
I'm super annoyed and frustrated.... with myself. I hate that I can't do simple things anymore. Walking from the couch to the fridge requires a coughing meltdown once I reach the fridge. There better be someone around if I want to get anything out of a jar. It would be nice to go up a flight of stairs and not feel like I just ran a marathon. Showers now take me close to 45 mins.... and thats not including the getting dried off and dressed after. I would love to be able to go to the store and shop in the adult section, I mean I am 25 not 12. Anything over 5lbs is too heavy for me. For one day I would just like to have a normal poop! Eating use to be fun, I would love to go out for a meal, now I eat because I have to.
I had my CF Clinic yesterday. My lungs are the same as they were a month ago, which is great! But I'm losing too much weight. It doesn't seem to matter what I eat it doesn't stick to my bones! The new plan is to increase Tube Feeds. I thought it was going to be 24 hours a day but it is actually 18, so I get 6 hours of freedom! Yayy!!
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I'm super annoyed and frustrated.... with myself. I hate that I can't do simple things anymore. Walking from the couch to the fridge requires a coughing meltdown once I reach the fridge. There better be someone around if I want to get anything out of a jar. It would be nice to go up a flight of stairs and not feel like I just ran a marathon. Showers now take me close to 45 mins.... and thats not including the getting dried off and dressed after. I would love to be able to go to the store and shop in the adult section, I mean I am 25 not 12. Anything over 5lbs is too heavy for me. For one day I would just like to have a normal poop! Eating use to be fun, I would love to go out for a meal, now I eat because I have to.
I had my CF Clinic yesterday. My lungs are the same as they were a month ago, which is great! But I'm losing too much weight. It doesn't seem to matter what I eat it doesn't stick to my bones! The new plan is to increase Tube Feeds. I thought it was going to be 24 hours a day but it is actually 18, so I get 6 hours of freedom! Yayy!!
I miss my simple life. And believe it or not I once did have a simple CF life.
Breathe Easy
Friday, July 15, 2011
Quick Note
Hello World!
Just a quick note. I just wanted to say keep fighting to all my Cystic Fibrosis peeps! Last month it seemed like we lost quite a few to this awful disease. But this month I have heard several stories of successful transplants and just the will to keep going!
Its hard to explain how I feel when I hear both the good and bad stories about CF. I don't actually KNOW any of these people outside the Internet world. But I get so excited and hopeful when I hear about a successful transplant or that someone just kicked a staph or pseudo infection. Its like CF is this giant monster and these successes are slowly knocking the CF giant off its feet! CFs health meter is going down!!!
And when I hear of the sad sides of CF my heart breaks for their family and friends. I feel like I know these people even though I don't. I don't like when the CF giant starts to get some power back by stealing peoples lives. I understand the fight everyone with CF goes through. I also understand what its like to have a loved one with CF, my brother also has it. But I am fortunate enough to never have lost someone really close to me. So I can't imagine whats that like.
I'm hopeful for a cure in my lifetime. I'll keep fighting, not only for myself, but for those who are no longer here to fight.
Breathe Easy
Just a quick note. I just wanted to say keep fighting to all my Cystic Fibrosis peeps! Last month it seemed like we lost quite a few to this awful disease. But this month I have heard several stories of successful transplants and just the will to keep going!
Its hard to explain how I feel when I hear both the good and bad stories about CF. I don't actually KNOW any of these people outside the Internet world. But I get so excited and hopeful when I hear about a successful transplant or that someone just kicked a staph or pseudo infection. Its like CF is this giant monster and these successes are slowly knocking the CF giant off its feet! CFs health meter is going down!!!
And when I hear of the sad sides of CF my heart breaks for their family and friends. I feel like I know these people even though I don't. I don't like when the CF giant starts to get some power back by stealing peoples lives. I understand the fight everyone with CF goes through. I also understand what its like to have a loved one with CF, my brother also has it. But I am fortunate enough to never have lost someone really close to me. So I can't imagine whats that like.
I'm hopeful for a cure in my lifetime. I'll keep fighting, not only for myself, but for those who are no longer here to fight.
Breathe Easy
Tuesday, July 12, 2011
Roller Coaster
Hello World!
Last week was a bit of a roller coaster. But definitely ended on a super high note! The 4th was an adventure, haha. I just laugh thinking about it. The whole family was at the Lake house for the holiday and we decided to pile into the boat and go across the lake for dinner. While we were in the boat we hit a freak rain storm, it was short but pretty much drenched us! It was a cold rain too! We scrambled to put a canvas up to block some of the rain, it became "keep Jessi dry, shes holding all the clothes" haha. Because it was raining in that area we skipped that gas station. We figured we could make it to the next one. So on we went, out of the rain and the sun came back out. It was lovely. We turn towards the gas station, we are about 5 boating minutes away, and we just stop. Out of Gas. So we floated and called the boat tow people and they said it would be a little while. So we drifted towards this dock with people on it and yelled to them. They were super nice and gave us a tow to the gas station. By this time everyone is hungry and really sick of this disastrous ride, haha. So we just dock near by and eat. It was a very eventful boat ride.
Tuesday and Wednesday were uneventful. Thursday however I met my mom for lunch in the next town over. We ate lunch at this little local diner. The food was... alright, not great. So we decided to walk down to the docks and get ice cream. While we were walking and talking my mom rolled her ankle in a hole in the sidewalk and fell and hit her face on the ground. I had a mini heart attack because I thought she had a concussion. She was stressful. I don't deal well with emergencies, I've actually never really had to deal with emergencies, so its more of I don't have the experience. But she is ok. Shes all bruised up and her ankle hurt for a few days, but she is doing much better.
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Friday was basic, nothing exciting. As for the weekend, I went down to CT to visit one of my Besties, Chelsea. It was such a good weekend. We got down there and sat by the pool and then Chels and her boy toy made us dinner. It was good too! They did a good job. They we played some card games, they drank Sangria, I splurged for Rootbeer! We ended the night watching the Justin Bieber movie... haha... its a good movie! The next day we went out to breakfast, Delish! Then sat by the pool and did some swimming. It was so relaxing and beautiful! A really great weekend.
On the health front, I'm still struggling with weight. Not sure exactly what my weight is, I've been too nervous to step on the scale. I've been contemplating moving to a mostly Tube Feed diet and then having food be 'bonus' calories. But I'm not sure. I have to talk to my doctor about it. I'm not sure how nutritious that really is, but eating is like a chore. Nothing ever sounds appetizing anymore. I use to love going out to eat but now when I go I never know what I want and I never eat very much. So I don't know what I'm going to do. I go to clinic next Monday so I'll just have to see what they say.
Breathe Easy
Last week was a bit of a roller coaster. But definitely ended on a super high note! The 4th was an adventure, haha. I just laugh thinking about it. The whole family was at the Lake house for the holiday and we decided to pile into the boat and go across the lake for dinner. While we were in the boat we hit a freak rain storm, it was short but pretty much drenched us! It was a cold rain too! We scrambled to put a canvas up to block some of the rain, it became "keep Jessi dry, shes holding all the clothes" haha. Because it was raining in that area we skipped that gas station. We figured we could make it to the next one. So on we went, out of the rain and the sun came back out. It was lovely. We turn towards the gas station, we are about 5 boating minutes away, and we just stop. Out of Gas. So we floated and called the boat tow people and they said it would be a little while. So we drifted towards this dock with people on it and yelled to them. They were super nice and gave us a tow to the gas station. By this time everyone is hungry and really sick of this disastrous ride, haha. So we just dock near by and eat. It was a very eventful boat ride.
Tuesday and Wednesday were uneventful. Thursday however I met my mom for lunch in the next town over. We ate lunch at this little local diner. The food was... alright, not great. So we decided to walk down to the docks and get ice cream. While we were walking and talking my mom rolled her ankle in a hole in the sidewalk and fell and hit her face on the ground. I had a mini heart attack because I thought she had a concussion. She was stressful. I don't deal well with emergencies, I've actually never really had to deal with emergencies, so its more of I don't have the experience. But she is ok. Shes all bruised up and her ankle hurt for a few days, but she is doing much better.
When she first fell.....
What she looks like now!
Friday was basic, nothing exciting. As for the weekend, I went down to CT to visit one of my Besties, Chelsea. It was such a good weekend. We got down there and sat by the pool and then Chels and her boy toy made us dinner. It was good too! They did a good job. They we played some card games, they drank Sangria, I splurged for Rootbeer! We ended the night watching the Justin Bieber movie... haha... its a good movie! The next day we went out to breakfast, Delish! Then sat by the pool and did some swimming. It was so relaxing and beautiful! A really great weekend.
On the health front, I'm still struggling with weight. Not sure exactly what my weight is, I've been too nervous to step on the scale. I've been contemplating moving to a mostly Tube Feed diet and then having food be 'bonus' calories. But I'm not sure. I have to talk to my doctor about it. I'm not sure how nutritious that really is, but eating is like a chore. Nothing ever sounds appetizing anymore. I use to love going out to eat but now when I go I never know what I want and I never eat very much. So I don't know what I'm going to do. I go to clinic next Monday so I'll just have to see what they say.
Breathe Easy
Friday, July 1, 2011
Sick of being sick
Hello World!
Been a weird week. I had two extra dogs with me all week. My mom was gone on vacation for the week so I kept her little guys with me. Max adjusted fine. Ruby had a little bit of difficulty. She was confused and restless the first night but eventually settled in. Tucker was a little confused with having them around all week as well. Usually its just me and Tuck. They get along just fine so it was really no big deal.
I started doing a fundraiser for the Cystic Fibrosis Foundation. I'm selling travel coffee mugs. The mug gets you free coffee from Dunkin Donuts every Sunday for the rest of the year. I had to commit to atleast selling 20 and I've been at it 1 day and I already sold 10!! Whoop Whoop!!
My Lungs really hated me last night. They kept me up alllllll night. I think I got, maybe 3 hours of sleep. It was awful. Just coughing and coughing and coughing. All that coughing really disturbed my lungs and up come some blood in the morning. My lungs are incredibly irritated right now. Not really sure why. Its not a congested, moving crap, type cough. Its like a dry, annoying, never ending, cough. Hopefully it stops. Otherwise I'm going to have to call the doctors. I know the moment I say anything to them they are going to say "HOSPITAL!" I'm too busy this July to go into the hospital. I have things planned all month long. CF is really putting a crimp in my life this month and I'm going to be pretty pissed if I end up in that Jail Cell this month!
To top all the Lung crap off, I'm down another 2 pounds. Its ridiculous. I don't understand why I just can't keep any weight on my bones! Its really discouraging when I'm trying, what seems like everything, and nothing happens. I wish CF would just give me some kind of friggin' break! I'm so sick of being sick!
Breathe Easy
Been a weird week. I had two extra dogs with me all week. My mom was gone on vacation for the week so I kept her little guys with me. Max adjusted fine. Ruby had a little bit of difficulty. She was confused and restless the first night but eventually settled in. Tucker was a little confused with having them around all week as well. Usually its just me and Tuck. They get along just fine so it was really no big deal.
I started doing a fundraiser for the Cystic Fibrosis Foundation. I'm selling travel coffee mugs. The mug gets you free coffee from Dunkin Donuts every Sunday for the rest of the year. I had to commit to atleast selling 20 and I've been at it 1 day and I already sold 10!! Whoop Whoop!!
My Lungs really hated me last night. They kept me up alllllll night. I think I got, maybe 3 hours of sleep. It was awful. Just coughing and coughing and coughing. All that coughing really disturbed my lungs and up come some blood in the morning. My lungs are incredibly irritated right now. Not really sure why. Its not a congested, moving crap, type cough. Its like a dry, annoying, never ending, cough. Hopefully it stops. Otherwise I'm going to have to call the doctors. I know the moment I say anything to them they are going to say "HOSPITAL!" I'm too busy this July to go into the hospital. I have things planned all month long. CF is really putting a crimp in my life this month and I'm going to be pretty pissed if I end up in that Jail Cell this month!
To top all the Lung crap off, I'm down another 2 pounds. Its ridiculous. I don't understand why I just can't keep any weight on my bones! Its really discouraging when I'm trying, what seems like everything, and nothing happens. I wish CF would just give me some kind of friggin' break! I'm so sick of being sick!
Breathe Easy
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