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
Live Life then Give Life, Please be an Organ Donor.
Friday, July 15, 2011
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.
![]()
![]()
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
Saturday, June 25, 2011
Had Some Movement!
Hello World!
Well its been a while since I've posted. Had a couple of crazy days that seemed to blur all into one. Then felt like crap for a few. Its been a roller coaster week. Monday was clinic day. That was the last post I did. Tuesday was a busy one for me.
First I stopped by the dress shop to pick up my Bridesmaids dress for my friend Chelsea's Wedding! Then a group of us used inflated rafts and floated down the river. It was great! We just floated along and stopped to swim and eat lunch. It was lots of fun. I hadn't been IN water like that in maybe, two, summers. So it felt great to wade in the water and not be freezing cold! I did bring my O2 with me, although I didn't wear. Bad tan lines, haha.
![]()
After the river float I had dinner with my brother's fiance's family... if that makes sense. It was Her, Mother and Grandmother and Sister and My Mom at dinner. We were planning Annalie's, my brother's fiance, bridal shower. It was interesting. Our families are very different haha. But we worked it out and I think it will be a great Bridal Shower. I was put in charge of games!! SWWEEETTT!
After dinner I was informed my older brother was in a motorcycle accident. WHAT! He doesn't even own a bike?! Well my uncle let him ride his. Nice job Uncle, haha. My brother was too stupid to wear a helmet so of course ended up with a head injury and had to be taken to the hospital. He is ok, and was released the same day. He is just banged up with road rash and stitches. Idiot!
![]()
So Tuesday was a long day! And because it was so long I decided to crash at a different house than the one that had my O2 Concentrator. So I had to use my portable O2 which is just pulse and not continuous. I had an awful night sleep. Woke up like every 2 hours. And had a headache in the morning. I spent all day Wednesday with my Grandma. That was fun. I hadn't seen her a while.
O and while I was waiting to meet my friend to pick up my dress I decided to let Tucker out of the car. It was his first City experience. He has never been to a busy city with lots of people and cars. He did really well. Sat close to me but didn't freak out. He is doing so well with his fear and stranger phobia. I'm a proud Mama!!
![]()
Tuesday and Wednesday were so busy they basically blurred into one long day. Thursday I slept pretty much all day, I was exhausted. Friday I was finally starting to feel better. I HAD MOVEMENT!!! I was finally able to poop. Like really poop, not just a little. The blockage is gone! THANK GOD! I've been drinking tons of Gatorade to stay hydrated. I don't want another blockage. My weekend is mellow. Just hanging out with the family at the Lake house. My Mom leaves for a week vacation on Monday. Not sure what I'm going to do with myself. I talk to her everyday! It'll be weird with her gone for a week. Hopefully Transplant doesn't call while she is away. I might freak out. She is the rock in the family. We would all crumble without her.
Breathe Easy
Well its been a while since I've posted. Had a couple of crazy days that seemed to blur all into one. Then felt like crap for a few. Its been a roller coaster week. Monday was clinic day. That was the last post I did. Tuesday was a busy one for me.
First I stopped by the dress shop to pick up my Bridesmaids dress for my friend Chelsea's Wedding! Then a group of us used inflated rafts and floated down the river. It was great! We just floated along and stopped to swim and eat lunch. It was lots of fun. I hadn't been IN water like that in maybe, two, summers. So it felt great to wade in the water and not be freezing cold! I did bring my O2 with me, although I didn't wear. Bad tan lines, haha.
After dinner I was informed my older brother was in a motorcycle accident. WHAT! He doesn't even own a bike?! Well my uncle let him ride his. Nice job Uncle, haha. My brother was too stupid to wear a helmet so of course ended up with a head injury and had to be taken to the hospital. He is ok, and was released the same day. He is just banged up with road rash and stitches. Idiot!
O and while I was waiting to meet my friend to pick up my dress I decided to let Tucker out of the car. It was his first City experience. He has never been to a busy city with lots of people and cars. He did really well. Sat close to me but didn't freak out. He is doing so well with his fear and stranger phobia. I'm a proud Mama!!
Tuesday and Wednesday were so busy they basically blurred into one long day. Thursday I slept pretty much all day, I was exhausted. Friday I was finally starting to feel better. I HAD MOVEMENT!!! I was finally able to poop. Like really poop, not just a little. The blockage is gone! THANK GOD! I've been drinking tons of Gatorade to stay hydrated. I don't want another blockage. My weekend is mellow. Just hanging out with the family at the Lake house. My Mom leaves for a week vacation on Monday. Not sure what I'm going to do with myself. I talk to her everyday! It'll be weird with her gone for a week. Hopefully Transplant doesn't call while she is away. I might freak out. She is the rock in the family. We would all crumble without her.
Breathe Easy
Monday, June 20, 2011
Digestion Hell
Hello World!
Well I have been in digestion hell this past week. Not enough coming out, so in turn not much can go in. Ive been having tummy troubles all week. Going to the bathroom is a bit of a task. Although I've never actually given birth, I felt like it this week on many occasions. I had cramping like crazy on one side of my abdomen. Its still there a little bit but not as bad as it was. Since nothing is really leaving my body, well not a lot has gone down, and stayed there! I'm still hungry... starving even! But about an hour or so after I eat, I tend to just puke it back up. Not keeping many calories down that way. No Calories = No Weight = DEATH SENTENCE (to be dramatic)!!!
I had clinic today. Lung functions same as 2 weeks ago which was good. Weight.... 90.5lbs. THERE IS NOTHING LEFT OF ME!! I'm like skin and bones, its gross. I have to have a certain BMI in order to stay on the transplant list. I'm half a pound away from being "deactivated" until I gain more weight. HOLY CRAP! My doctor told me the crampyness is due to a blockage! BLOCKAGE, greeeaaatt!!!! They think the blockage is due to dehydration. Very possible as I hate water and love to sit in the heat.
Solution: MIRALAX! And lots of it. Also 32oz of Gatorade a day, to replenish. If the Miralax doesn't work we move on to GoLytely... that stuff makes you go! Haha, so hopefully I won't need that. If both of those still don't work, surgery to "unblock" me. YIKES! I don't want any surgery. Anesthesia makes me really nervous. I don't like being "knocked out." And I heard it can be dangerous for patients with respiratory problems. I don't need anymore 'danger' in my life. I'm pretty tapped out.
So hopefully I gain back the 8lbs I have lost in a week and a half. I can't be this small. Its just not healthy.
Breathe Easy
Well I have been in digestion hell this past week. Not enough coming out, so in turn not much can go in. Ive been having tummy troubles all week. Going to the bathroom is a bit of a task. Although I've never actually given birth, I felt like it this week on many occasions. I had cramping like crazy on one side of my abdomen. Its still there a little bit but not as bad as it was. Since nothing is really leaving my body, well not a lot has gone down, and stayed there! I'm still hungry... starving even! But about an hour or so after I eat, I tend to just puke it back up. Not keeping many calories down that way. No Calories = No Weight = DEATH SENTENCE (to be dramatic)!!!
I had clinic today. Lung functions same as 2 weeks ago which was good. Weight.... 90.5lbs. THERE IS NOTHING LEFT OF ME!! I'm like skin and bones, its gross. I have to have a certain BMI in order to stay on the transplant list. I'm half a pound away from being "deactivated" until I gain more weight. HOLY CRAP! My doctor told me the crampyness is due to a blockage! BLOCKAGE, greeeaaatt!!!! They think the blockage is due to dehydration. Very possible as I hate water and love to sit in the heat.
Solution: MIRALAX! And lots of it. Also 32oz of Gatorade a day, to replenish. If the Miralax doesn't work we move on to GoLytely... that stuff makes you go! Haha, so hopefully I won't need that. If both of those still don't work, surgery to "unblock" me. YIKES! I don't want any surgery. Anesthesia makes me really nervous. I don't like being "knocked out." And I heard it can be dangerous for patients with respiratory problems. I don't need anymore 'danger' in my life. I'm pretty tapped out.
So hopefully I gain back the 8lbs I have lost in a week and a half. I can't be this small. Its just not healthy.
Breathe Easy
Monday, June 13, 2011
What the F!
Hello World!
Hope everyone had a great weekend! Mine was rainy and cold!! My cousin had his engagement party this past Saturday. Well... if I wasn't related to the kid I would of left! First of all it rained. Not a little sprinkle but rain. Cold, windy, rain! I went early with my mother to help set up.... why? We got there around 9am, party didn't even start until 1. Went had to set up tables, tents, tarps, get the food out.... ALL IN THE RAIN! We weren't allowed to use the house. Only the tiny screened in porch. What the F, dude. So before the party even started my feet and shoes, soaked, my O2 bag, soaked, sweatshirt and 2 shirts underneath.... SOAKED! OMG was I miserable. Finally the woman who's house we were at said we could use the kitchen. A small sanctuary from the rain. I actually sat in my car with the heat on to dry my socks and warm up for a little while.
Once the party started.... I quickly realized everyone except my mom, 2 brothers, and grandparents smoke. GREEEAAATTT. Not one of them cared I had oxygen on. They would light up right next to me. And what was I to say, we were outdoors. I felt like it was a lost cause to say anything so I would just walk away. I ended up staying until about 6pm.... I couldn't bear to stay another minute. I would of left a long time ago but I didn't want to be rude to my cousin.
So Sunday then turn was crummy. My back and arms were sore from lifting and moving things. I was still cold to the core of my body. And my lungs pretty much hate me... they still hate today! I'm hoping we start getting along again because I have another clinic appointment Monday that I need to be good.
Today the sun peaked out for a few hours so I soaked up as much as I could. I still feel a little sluggish but I think that will clear up in a few days. No more full days in the rain for me! Done with that shizzzz!
Breathe Easy
Hope everyone had a great weekend! Mine was rainy and cold!! My cousin had his engagement party this past Saturday. Well... if I wasn't related to the kid I would of left! First of all it rained. Not a little sprinkle but rain. Cold, windy, rain! I went early with my mother to help set up.... why? We got there around 9am, party didn't even start until 1. Went had to set up tables, tents, tarps, get the food out.... ALL IN THE RAIN! We weren't allowed to use the house. Only the tiny screened in porch. What the F, dude. So before the party even started my feet and shoes, soaked, my O2 bag, soaked, sweatshirt and 2 shirts underneath.... SOAKED! OMG was I miserable. Finally the woman who's house we were at said we could use the kitchen. A small sanctuary from the rain. I actually sat in my car with the heat on to dry my socks and warm up for a little while.
Once the party started.... I quickly realized everyone except my mom, 2 brothers, and grandparents smoke. GREEEAAATTT. Not one of them cared I had oxygen on. They would light up right next to me. And what was I to say, we were outdoors. I felt like it was a lost cause to say anything so I would just walk away. I ended up staying until about 6pm.... I couldn't bear to stay another minute. I would of left a long time ago but I didn't want to be rude to my cousin.
So Sunday then turn was crummy. My back and arms were sore from lifting and moving things. I was still cold to the core of my body. And my lungs pretty much hate me... they still hate today! I'm hoping we start getting along again because I have another clinic appointment Monday that I need to be good.
Today the sun peaked out for a few hours so I soaked up as much as I could. I still feel a little sluggish but I think that will clear up in a few days. No more full days in the rain for me! Done with that shizzzz!
Breathe Easy
Friday, June 10, 2011
Not Bad
Hello World!
Well my clinic on Monday went pretty much how I thought it would. My weight was down a little bit and my Lung Function tests were down. It was decided that I get 2 weeks to bump things up. So I have to go back June 20th. If things still don't look good it will be IV and hospital time again. I'm really hoping that doesn't happen. IVs really put a damper on summer activities. I become super sensitive to the sun, the IV times are always crazy, and the worst part is being accessed! I can't shower OR go swimming!!! LAAAMME!
The rest of my week was good. I went out to dinner Wednesday night with my Mom. Always a good time. We did some window shopping. We also went and picked up my Bridesmaid dress for my brother's wedding! The color is great! I really like it. I fit of the dress though.... not quite what we had expected. I'm so small that the dress is obviously big on me. So hopefully after alterations it will look stunning! I have faith it will.
This weekend will be busy. I have an engagement party to go to for my Cousin. Me and my mom are going early to help set things up. It will be a long day! I hoping we get some good weather. Not too hot and not rainy! But it should be fun!
Breathe Easy
Well my clinic on Monday went pretty much how I thought it would. My weight was down a little bit and my Lung Function tests were down. It was decided that I get 2 weeks to bump things up. So I have to go back June 20th. If things still don't look good it will be IV and hospital time again. I'm really hoping that doesn't happen. IVs really put a damper on summer activities. I become super sensitive to the sun, the IV times are always crazy, and the worst part is being accessed! I can't shower OR go swimming!!! LAAAMME!
The rest of my week was good. I went out to dinner Wednesday night with my Mom. Always a good time. We did some window shopping. We also went and picked up my Bridesmaid dress for my brother's wedding! The color is great! I really like it. I fit of the dress though.... not quite what we had expected. I'm so small that the dress is obviously big on me. So hopefully after alterations it will look stunning! I have faith it will.
This weekend will be busy. I have an engagement party to go to for my Cousin. Me and my mom are going early to help set things up. It will be a long day! I hoping we get some good weather. Not too hot and not rainy! But it should be fun!
Breathe Easy
Subscribe to:
Posts (Atom)