A Couple Things....

Hello World!

Well I had a good day! I went shopping with my Mother. Got some new shirts. Pick out a nice top for Thanksgiving. I also got a leather jacket. Its my first one, I like it. Overall it was a good shopping trip. I also went out to dinner with both my parents. Thats always fun. We went to a local spot called The Backroom. So good.

Yesterday, my younger brother sent me on a mission. He decided to go to a Halloween party last minute. I was told to fine him a costume. WELL everybody seemed to be out doing last minute shopping. The party store was mobbed!! I ended up finding him a pretty good one. He ended up being Mario and my other brother went as Luigi! They looked good!

So tomorrows Halloween, everyone have fun!!! Breathe Easy.

Hello World,

Well today was nothing fancy. I went with my older brother, who also has CF, to his doctors appointment. He is in a clinical trial for the new VERTEX drug. I'm not exactly sure how the overall trial is doing but my brother seems like he is in good shape. Although my brother and I grew up together, our CF lives have been very different.

Tomorrow I go to Boston for a routine check-up with the transplant team. These trips always make me nervous. Not really sure why, they are just standard appointments. O well, that too will pass.  Later this week I'll be going out to dinner with some friends. I always love going out for food, it is a favorite past time of mine.

Well I'm not feeling overly chatty this evening so I'm off! Breathe Easy.

Just a Tuesday

Hello World,

So today I had to bring my dad to an eye appointment, No biggie. For those of you that don't know my dad has cancer. He was diagnosed in July 2009. He has stage 4 terminal cancer. He has been going to chemotherapy EVERY week since being diagnosed. I was the one who brought him to his appt that July. Scary stuff. So today I brought him to his eye appt, My dad comes out after about an hr in the doctors office and tells me he has to go to another eye doctor because there is a cloudy mass on the back of his eye. Next sentence could of killed me.... It could be Cancer.

WHAAATTT!!! Everytime I seem to take him to the docs we get bad news!!! Well I'll be waiting to hear if its cancer or not. Hopefully not. Well that was the highlight of my day. Otherwise it was uneventful. Tomorrow I'm going to see my Gram. Love visiting her. She is so wonderful. Why I see her I also get to visit her puppy dogs. I just love dogs. I think life would be so empty without them in our lives. Hmmm well nothing else interesting to share. Hope all is well with you and your family. Breathe Easy.

Weekend!

Hello World!

How is everyones weekend going? Mines pretty good all things considered. It is really rainy and rather chilly but I guess that comes with the Fall territory. I just news that my Grandfather will be visiting tomorrow, thats always exciting. I only see him a few times a year, mostly holidays. So this will be a nice, unplanned visit. He has probably as many medical problems as I do, so conversation is always related to medicince. Ha.

My brothers puppy, Lucy, who is SO CUTE by the way, just got herself banished from my bedroom this morning. She chewed up not 1 but 2 sandals!!! They were a good pair too. Ones you could wear with everything. So now she is banished until shes done her chewing phase.

Well I'm off for the night. Everyone enjoy their weekend. Breathe Easy.

A Middle Ground

Okay, so about a month ago I had no appetite and really wasn't eating much. I also could barely keep food in me. Everything would lead to vomiting, STRESSFUL! I was admitted to the hospital to pack on some pounds and try and control the nausea. Well it worked. I have successfully gained a few "extra" pounds and I'm loving it. My problem now, I'm hungry allllll the time!!! hahaha. There is no middle ground to this madness. My family can't keep enough food in the house! It is crazy.

On other news. Tomorrows Friday!! Yeah, love the weekends. I also got my car fixed after a week and a half of being broken. That was wonderful. I don't go that many places but I didn't realize how much I missed my car until I had to wait for someone to come get me to go out with my friends. I felt like I was 15 again, haha. Awful. Well I'm off to catch some sleep. Breathe Easy.

A Couple Thoughts....

Hello World!

It's Monday! How's everyone's Monday going? I spent my day just lounging around. It was pretty nice and peaceful. This past weekend was out final weekend at the Family Lakehouse for the summer. So I guess I have to finally admit the summer is over. BOOOO!! I really dislike the winter months. I don't like being cold, people become bad drivers in the snow, and it always make my health worse. LAME!

Well I just found out today I have to have another 6 minute walk test and an ABG (Arterial Blood Gas) test for my Transplant team. The walking will be easy, the ABG.... thats a whole different story! I HATE needles. The thought of getting poked causes lots of anxiety and I usually cry. So thats awesome news! haha.

Well I don't have much to report! So this will have to be it. Breathe Easy!

Not Your Ordinary Boxing Match

Not Your Ordinary Boxing Match
Having several fatalities under its belt Cystic Fibrosis remains the undefeated champion. Life with CF is like a boxing match. Except the rounds last for months and the fight goes on for years, not just an hour or two. Like a boxer training before and after each fight, we do our training before and after each day. Only instead of being in a gym working out with weights, we're at home taking a handful of pills and doing over an hour a day of nebulized breathing treatments and vest therapy. We fight as hard as we can, but no matter how hard we punch or jab at our opponent, it hits back harder and harder. Then just when we think we have the fight under control and doing good. BAMM! Out of nowhere comes an uppercut, then a right hook and a left and blow after blow. Then just as our opponent has us against the ropes getting ready to deliver the final uppercut to put us out and win, DING! DING! the bell rings. Its the end of the round. Instead of going to our corners to talk to our manager and get some water and clean up, We go to the hospital to talk to our doctors and get some IV antibiotics and get cleaned out. After 2-3 weeks of that, DING! DING! we get out and start next round. Like a boxer going into the round with a little rest and a few jab wounds, we start out strong, then it turns into a repeat of the last round.Then after round after round it is the same thing, like a boxer getting beat up more and more, getting weaker and more tired as each round passes. You keep fighting the best you can. But like a boxer in the final rounds you begin thinking, "Should I give up?" "Should I throw in the towel?"  Like a boxer who really wants the champs belt, the answer is no. You keep fighting as hard as you can fight and say to yourself, if my opponent wants to remain the champ, he is going to have to earn it, because we're not going down without giving it our best.

 

I began my fighting career almost 29 years ago on April 30,1976, the day I was born. Though I know I will not be able to defeat my opponent I know it someday will be defeated and people like me will not have to spend their lives fighting each day they live or for each breathe they take because they will have the cure to defeat the opponent. I just hope they think back to those of us who gave our lives, to be studied and monitored and fights be documented by the CF team so they could find a way to defeat CF and say Thank You.  ~ Jamey Carver

This was written by a fellow CFer. He lost his fight against CF on June 3, 2006. While I never knew Jamey, I read about his story on a website that was submitted by his sister, Megan Carver. She wanted to share her brother's inspiring words and create awareness for CF. She continues to fight in Jamey's memory.

Just Thinking

Hey World!

Wow, October already. I can't believe its fall. I also can't help but think about last fall. This time last year I was laid up in the hospital on life support. I have no memory of October 2009 at all. It is kind of scary. While part of me worries that it could happen again this winter, I am also so thankful that I made it through the last time.

I just had a clinic appointment a few days ago. It went pretty well. I actually gained weight and my PFTS are the highest they have been in almost a year. So overall it was a good appointment.  I start Pulmunary Rehab again soon. I actually a little excited. I took the summer off so I haven't seen my Physical Therapist in a while. She is pretty awesome. I'm the youngest one and only one with CF in class. The majority of the other people are 50+ and there because they have emphysema. Bet they regret smoking their life away now. Well that was a little mean, but its true. They kind of brought it on themselves.

Well its getting late. So I'm going to take off. Love!! Breathe Easy

Packin on the Pounds

Weighed myself this morning. A little bummed, lost a pound. Most people would be thrilled to lose weight. For me, it's a death sentence. I have had so many problems with my weight the past few years. I was just recently hospitalized for 14 days to help put on some pounds. I was able to gain 5lbs in 2 weeks. AWESOME! Any tips on keeping calories on?

Now trying to keep that weight on is a hard thing to do. I will say, the silver lining is being allowed to eat as many cupcakes as I want! Ha.

Other news: I went with my soon to be sister-in-law to scoop out a possible wedding spot. Very nice! I really like it. She has a few other spots to check out before she decides. But it is Exciting!!!

First Entry

Hello World!

I know its late but I can't sleep. Made some cupcakes today. YUMM! Trying to keep those calories on me. I'm at 96lbs my goal is 100lbs. It is harder to gain weight than you think. I spent the day dogsitting my brothers puppy, Lucy. She's a cute one. Tomorrow I get to go with my soon to be sister-in-law and look at possible wedding venues. It should be great fun. Well this entry will be a short one. Have a goodnight!