Birthdays

Hello World!

Had a great weekend! I attended a surprise birthday party for one of my best friend's fiance, Matt. He turned 26! She did a great job at planning his birthday. We went to Legal Seafoods in Boston! The menu was cutomized to say "Happy Birthday Matt" at the top. Very cool. After that the bunch we out to some bars and had a good time. I didn't go out after dinner, I had to return home and hook up to my IV pole. So that was a bummer. But there is always next year!

Matt and Chelsea!

The whole bunch of us at dinner!

Well that was Saturday. Today is Wednesday. I completed my last round of IVs today! Which means I get to be deaccessed! So great. I thought it would happen today but the Visiting Nurse couldn't come out today so it has to wait until tomorrow. But after I will finally be able to take a REAL shower again AND I will get to scratch! I have sensitive skin to tape, so I itch the entire time I have a tegaderm on my skin. I have scratched so hard in the past that I ripped my Teg and needed a replacement. Ooopsy!

Tomorrow, March 31st, is also one of my best and oldest friends Birthdays!!!! I have known Chad since 6th grade! We have been through so much together. We have have tried the dating thing but we realized we are just friends, no romance feelings there. O well. We have also bonded over medical problems. I have a bunch and so does he. His biggest one is Diabetes. He was diagnosed in 8th grade and it was very scary. He was also by my side on a daily basis when I almost lost my life in 2009. My whole family knows him and I know his whole family. He is truely a great friend. He is sadly in the hospital right now. Been there since the 22nd. He has a mystery problem going in in his chest. He has been put through tons of tests and procedures but the Doctors can't figure out whats wrong. : / So tomorrow I'm going to bring him brownies, not sure if he can eat yet, but they are his favorite. I've got my fingers crossed they figured it out soon so he can get out of there!

Chad and Patrick, who has been with him since birth!

Its a little weird being on this side of the hospital situation. I don't really like it. I'm just so curious whats up with him that I bonbard him with questions all day everyday haha. Which I know must get annoying. So I'm hopinh he gets out soon so I can stop bugging him. Thinking good thoughts!

Breathe Easy

Not Your Ordinary Boxing Match

I posted this when I first started blogging. I absolutely love it and feel it describes CF perfectly. Jamey was able to explain CF in a way I never even thought of. I read this story atleast once a month. It helps remind me to keep fighting even when I'm feeling like its a lost cause. I've got my eye on that Championship Belt!

 

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.

Lonely

Hello World!

Cystic Fibrosis is a funny little disease. Every CFer has different challenges and experiences life differently. For most of my life the only other person with CF that I knew was my my older brother. We were told right from the start that we were not allowed to be in contact with any other CFer. While Cystic Fibrosis is NOT contagious, CFers can pass 'bugs' to eachother and cause 'supergerms.' It can be dangerous. For whatever reason, unknown to me, my brother and I could be in contact and it was ok, but not with anyone else. So there are no support groups for CFers like there are for people with cancer or whatever. That can be lonely.

For a long time I rarely told anyone about my CF. I was afraid of judgement. I wanted to be treated normally. Its not like other people say "Hi I'm __, I have ADD." So it would be weird if I said "Hi I'm Jessi, I have Cystic Fibrosis." That might scare people away, haha. I have a close group of friends I have known since I was very young, like 9 or 10 that know about my CF but new people had no idea. Most people have never even heard of Cystic Fibrosis. So I was feeling lonely in the CF department and decided I needed to change that.

I joined the world of twitter. My thoughts going into Twitter was I'm just going to be completely open about having CF and just see what happens. If I feel uncomfortable, I'll just delete my account. I'm SOOO glad I did!! I have met so many people who have CF or know someone with CF. CFers who have gone through transplant, other waiting just like me. I've met people from all over the world. I was shocked there were that many people who had even heard of Cystic Fibrosis, haha. It is a huge community I never knew existed. I'm so grateful I joined. The people I have met on there have opened their lives, CF or otherwise, so in turn I feel safe to share my story. It has given me a place of non judgement to just speak my mind and share what I feel. It has been a huge eye opener to hear about people who feel the EXACT same way about things. Sometimes I read fellow CFers posts and feel like they are inside my head! It still blows my mind that someone else has the exact same thoughts as me. So I send a huge thank you to twitter for giving me a platform to just, well, be me!

Also a HUGE thanks to all my twitter friends. You guys give me great support and there is always someone out there who will listen to any problem I have. You are all a big part of my life now. Again, Thank You!

Breathe Easy

Time for Change

Hello World!

I'm free!!! I was in the hospital for a week and just got out today. Very glad to be home! I missed my Tucker. One great surprise I got when I arrived home was my dad revamped my room! My room was in super need of a good cleaning and I've been meaning to do it. But while I was out, Dad did it for me! He did a great job. Washed and made my bed. Put up new shelves for me. Washed and hung up my clothes. And just all around organized my room. Man he is a wonderful guy! I love him, he is so great to me! :)

I have also decided I'm going to do a Charity Walk in September for Cystic Fibrosis. I'm still in the beginning stages of that so I'll share more details when I get them. Also while in the hospital I was doing some thinking and starting April 1st I'm going to turn over a new leaf. I'm going to be more dedicated to being active. I'm really sick of being in the hospital so often, so I've decided to be more proactive about it. Things need to change. Tucker is going to be my partner in this new transformation. Tuck has some funky quirks we are going to work on as well. My goal for him is to get him to be more of a companion dog by the end of summer. He is friendly but has a big stranger phobia where he barks and even sometimes growls at strangers. We are going to work hard to change that.

So both Me and Tuck are going to start off on a fresh foot starting April 1st! Its time for some change!

Breathe Easy

Purple Cupcake

Hello World!

Well, I'm back in the slammer aka the hospital. I have a fever for 3 days and even turned a little blue one day. So off to the hospital for a clean out I went. Still here, day 4. Having a good response to the IVs so hoping for an early release next week. I'll then finish up the 14 day cycle of meds at home.

The other day, on twitter, I saw a fellow CFer mention that they hate when people say they "suffer with CF." I tatally agree. I would never say I suffer. Sure my life may be different but by no means am I suffering. I have tons of love and support, a roof over my head, food in my belly and clothes on my back. I'm NOT suffering. You should never say anyone suffers from CF. Just because it isn't easy to live with doesn't mean its impossible.

I miss my Tucker. I always miss him when I'm gone. My Mom humors me and holds the phone up so I can yell his name and get him all excited. Ha. Shes a good mom. Today she brought me a Purple Velvet Cupcake from a local bakery. It was sooo good. Its tastes like vanilla and had buttercream frosting. I tried to convince my future sister in-law to get that as her wedding cake since her colors are a deep purple and burnt orange. But she decided its just too different, bummer. O well, now my wedding cake can be purple!! Hahha.

Breathe Easy

Angels

Hello World!

Do you believe in Guardian Angels?

I'm the type of person who generally needs proof in order to fully believe something. Without proof, its just someone else's word. I don't like to discount things because of lack of proof but I like the phrase "evidence speaks for itself."

My mother believes in Guardian Angels. She has her reasons and I respect them. She has shared with me 2 stories that gave her proof of their existence. The first story was about when she met my Dad. It was a blind date and they were meeting at a bar. She walked into the bar and swears she saw a halo floating above my Dad's head. They have been together for a little over 30 years now and still going strong. The other story she shared with me happened to my Mom when she was driving. She had all 3 of us (the kids) in the car. We were 3,4, and 7 at the time. Her van hit some ice and was sliding nose first into a cement wall. She said it happen so fast but one minute she was sliding and the next her car was stopped and parked in the breakdown lane. She fully believes her Guardian Angel helped her steer. There have been other times as well, she said but has not shared them with me. She believes everyone has a Guardian Angel watching over them.

In early 2009, I was really down. I was incredibly sick and slipping into a depression slump. I was finishing up my last semester of college and it just seemed to be taking everything out of me. I was feeling pretty lonely so I asked my mom if I could get a dog, I live in my parents house so their rules. She agreed to let me got one but with one condition: It couldn't be a small lap dog that I would just lay around and cuddle with. So I decided I wanted a smart dog, one not too big but not a little guy either, my pooch could be a slobber hound because I hate dog drool. I wanted a low maintence pooch. A family friend suggested a Border Collie. I did a little research on the breed and met her 2 BC's and feel in love. I wanted a BC! We found a local breeder in the paper who had some pups that were ready to go, perfect timing! I had in my head that I really wanted a black and white BC. We get to the breeders and all the pups are Liver (brown) and White. There were 2 girls and 1 boy. They are puppies so of course I was thinking SO CUTE! But the little guys squirmed around on the floor and I picked up each girl, they were very small BC's. Then this little brown furball came barreling around the corner and looked like a little bear cub. I picked him up, he was a little smelly and dirty from being outside and just melted. He was mine. Tucker became mine that day, February 9, 2009.

Tucker has been an incredible dog for me, right from the start. He is high energy and always wants to play. He is very smart and is highly trainable. Tucker has kept me active and moving. He has provided companionship in many ways. He seemed to come into my life at the perfect time. Tuck has never once tried to chew my O2 tubing, been scared of all my machines, gotten into any of my medical crap. I think, he thinks, all my medical stuff is just an extension of me. Its been wonderful. I have taken him to serveral training classes and one day we might even do some agility. He always seems to know my moods and in a way, takes care of me. He lays outside the tub when I shower, sleeps at the foot of the bed, walks next to me without a leash. He is always right there with me and for me. Sometimes with Cystic Fibrosis I have coughing fits, which can lead to gagging and sometimes throwing up. Tucker knows to give me some space and just watches to make sure I'm ok. When I can collect myself again he will wonder up and just sniff me as to say, You Ok? He is an amazing dog.

Tucker leads me to believe there is someone or something always looking out for you. I like proof and evidence and I think Tucker is that. Whether Guardian Angels are true or not, I know I have a Guardian in Tucker. I wouldn't be where I am or who I am today, without him in my life. As cheesey as it sounds, he gives me a reason to get up some mornings. Sometimes that reason is to Pee and Eat but hey, getting up is half the battle somedays.

Breathe Easy

Call Me..

Hello World!

I'm sick of waiting.

CALL ME, BWH! CALL ME!!

So sick of waiting.

Breathe Easy

Never an Age Limit

Hello World!

I had a dentist appointment yesterday. I needed a filling. I have never had a filling before so when the dentist asked if I wanted lidocane I wasn't sure. I have a bad anxiety when it comes to the unknown, well unknown procedures. I like to know what is going to take place, everything. Well I wasn't told about the process of a filling until the day of. They wanted to put a needle in my mouth to administer the lidocane. To most people that is nothing, a small pinch. To me, nothing is a small pinch. Needle sticks hurt, a lot. For most people it isn't pleasent obviously but tolerable. I can't deal with anything painful. I have no tolerance for pain. It is a HUGE weakness of mine. I hurt and bruise easily. It is not fun.

But what bothers me the most is that because I'm 25 Doctors and even the Dentist think I should just be OK with being poked. WRONG! I don't get why there is an age limit on fear. Just cause I'm not 5 doesn't mean I should be ok with getting poked. I tend to shed some tears when I'm frustrated and nervous. Its just me and what I do. I have a little cry during the procedure and then I'm fine afterward. I once had a nurse tell me I was too old to be crying and to stop, I was 19 at the time. UH WHAT?!?! I will cry at any age I want! I must of missed the memo on crying etiquette. I was blown away when that nurse said that to me. Well needless to say I told my mother, who the spoke to my Doctor and well that nurse was no longer allowed in my room. Sorry to all the nurse out there who will read that and think "over reaction." But part of your job is to help make the patient comfortable. That nurse did nothing but make me feel uncomfortable.

Now I'm off topic. My point was I just don't understand why some people think there should be an age limit of fear. No one ever says to someone you are to old to be afraid of heights or spiders. Thats just ridiculous to say. No one can tell me how to feel. And if I feel upset or nervous its going to show. I'm not going to hide it for their sake. I am my own person.

Breathe Easy