Thursday, December 19, 2013
Wednesday, December 4, 2013
Friday, November 29, 2013
Monday, October 28, 2013
Sunday, October 20, 2013
Friday, September 20, 2013
Sunday, September 1, 2013
Saturday, August 31, 2013
Friday, June 14, 2013
Tuesday, June 11, 2013
Tuesday, May 28, 2013
Saturday, May 25, 2013
I was talking with my best friend and she asked about my grandma on my moms side, the crazy thing is i wrote this just 2 days earlier. thats why were bff's cause she and i are always on the same page. <3 ya B
Friday, May 24, 2013
Even after all these years of having cf I still hate to have my blood drawn. I get anxious and nauseous. Certain things I have learned to come to terms with but when it involves needles I'm a no go. I went to the local laboratory to get some basic labs drawn and also a test to identify my genes I know one is n1303k and hopefully I'll find out the other one and maybe open some new opportunities with the new medicine. As I go in I notice the young lady behind the counter looks familiar but I always think I know everyone so I shrug it off and wait for my turn. Turn out we live in the same little town and I went to school with her and her brother. I knew she looked familiar and was surprised she knew who I was. So its time to get my blood drawn and she asks me to sit in chair 1. I sit. She is going to take my blood. Well,.... I was waiting for over an hour and she didn't help one other person but wanted to stick me? Weird Have you ever had a blood draw that just makes your stomach turn. It's not the poke that hurts it's the pressure and the jiggling of the needle when they switch out tubes. That was what I was experiencing. I was breathing trying not to pass out cause the room was spinning and I just kept telling myself breathe breathe. It was done. I walked out and thought did I ever offend this girl? Did we have some beef that she was going to right by giving me the blood draw from hell? Did I say something when we were younger? Call her names? Tease her? Nope nothing came to mind so I'll just chalk it up to lesson learned. Be cautious who takes your blood and make sure you have no history with that person especially if its bad history
Wednesday, May 22, 2013
Wednesday, May 1, 2013
1. Cystic fibrosis is a genetic disease. I'm the only person in my whole family (both mother and fathers side) to have CF.
2. I cough a lot and with that usually comes flying mucus. So be cautious when approaching me.
3. When I was diagnosed at 10 I thought only the really sick kids got the vest. So when the doctors wanted me to get one I secretly cried that night.
4. One of the hardest things about having cf is the way it changes your family and how it works. It can change everything and it takes special people to be apart of it and accept the reality of this life that comes with this disease.
5. The average life span is 37. I know way to many great people who never reached their mid 20s. The fundraising adds years to lives and so does transplant but even 37 is to young to leave this earth
There's your random 5 facts for the day. I hope you take some time and spread awareness.
Peace love and hello kitty to all
Tuesday, April 2, 2013
*FYI Bosco is an English Mastiff who is 18 months old and weighs over 150 lbs but doesn't know it *
The love of a dog is an amazing thing the way they feel what we are feeling and understand when we are hurt. The bond is truly remarkable and I hope everyone is able at one time to experience it.
Bosco booty is the light in my life when things get dark. He makes me feel important to him. He is my friend and my treatment buddy I always wanted a buddy to do treatments with but never thought it would be a dog like him but he is the sweetest thing and I don't mind he takes up half the couch.
Bosco Booty thanks for being my dog
Saturday, March 30, 2013
I have been having a hard time lately. After spending my 26th birthday in the hospital for hompotysis. I haven't felt any better. I just feel stuck in between sick and sicker. Every day varies so much that it makes this so difficult to find happiness. I just feel defeated all the time. I get so tired just from the smallest tasks that everything becomes bigger then what it really is.
Cf is one hell of a disease. It can morph and change so quickly...it has no mercy on you and especially others. It is ugly but only attacks the most beautiful people. Beautiful on the inside and out. It challenges our love and patience and our strength. But everything cf is...I'm more.
For every person who has fought the battle will tell you it's a battle after battle but no matter what the outcome is we all win with every smile and laugh we become the victorious ones never letting cf rule our world.
I speak to fast when I should talk slow. I'm weak when I need to be strong. Fearless when I should have fear. Everything about me is inconstant with what I'm supposed to be. I smile when I should cry. And cry at my happiest moments.
The pain doesn't make me feel more alive it makes me more aware of the pain.
I'm fighting with my lungs and i'am loosing. They feel the need to rattle and roll when it's not necessary. And they seem to have collected new residents in MY lungs. Loads of mucus that likes to fly out at a whim so please be cautious when approaching me in a coughing fit. Those suckers are on a mission to escape.
My only joy this evening is bossy. He is the best cuddlier. Just him being here takes my mind off the tummy ache and nausea I'm feeling. Plus I'm not alone when he is here he is the definition of comfort.
Tuesday, February 26, 2013
― Mitch Albom, Tuesdays With Morrie
At the age of 17 i lost a friend, not only a friend but a cyster. Someone who is close to me and I love very much. Cystic Fibrosis is an ugly disease I cant express this enough to those of you who have no idea what this disease can do to a person let alone their family. It is awful. Stephanie was 17 and was a bright light in a dark disease. She was the kind of person you would meet and find yourself wanting to know her better. She was quite and kind, a beautiful smile that at time was timid and weak from the pain of CF but she never complained. Stephanie was a proud Aunt, something her and I would talk about how much she loved Andrea and wanted to live to see her grow up. She was many things but she was most importantly loved. She was loved so much and she loved everyone; her life was filled with love even in the last moments and her last breathes. To her family who I always have had such a huge amount of respect and love for I hope you know how much stephanie is loved and how you created a beautiful person inside and out. She always talked so much about her family with love and appreciation for all they went through. I cant imagine the pain you have right now and I wont pretend to understand the pain of loosing your baby but please hear me when i say how much my life is better for knowing stephanie and for loving her. I promise i will always keep her in my heart.
Im really at a loss of words right now, usually i always have something witty and fun to tell you but tonight i failed. I cant imagine how beautiful the view is from heaven, even on a cold night like tonight it must be breathtaking. How does it feel to breathe? Is it everything we always hoped for? I hope you ran through the gates of heaven and right to the arms of Aimee. I know you miss her and i think ill miss you the way you missed her. You were a close and dear friend to me and i cant believe at only 17 you are gone. I know how badly you wanted this transplant and the chance of a new life with new possibilities but i think you will accomplish so much more in heaven. Add me to the long list of people to check in on and remember how much i love you x0x0x0
Saturday, February 16, 2013
Hi my name is Jessica. I'm 26 years old. My life revolves around cf and the day to day care. I currently weigh 104 but at my highest at 1year ago was 120. I culture 3 bugs pseudomonas aspergillus and also achromobacter xylosoxidans. My lung function is a solid 55% and sometimes better. I struggle to breathe and walk at the same time. I cough so hard I pull muscles and constantly vomit. My day to day routine is different every day mostly depending on how I feel. A good day is marked by a good shower with no vomiting and the ability to get ready without needing a nap.
I think I'm at the point right now where I need to get serious and start taking things to a new level but emotionally and physically I can't right now I'm weak minded and weak spirited. I need motivation and I need some sign of hope.
My name is Jessica. And even though it sounds like my life is difficult; it's a lot better and more stable health wise then some others I know and care for.
We need this damn cure.
Tuesday, January 8, 2013
I'm laying in bed it's 10 till 2am and I'm awake despite my best efforts to sleep. I start to drift into that place where I think to much and over analyze the simple things. Just the normal stuff to be thinking about at 2am. I'll be turning 26 this year I'll also be getting married and hopefully moving into a home of my own. But I worry about my health and how no matter how much I plan it ultimately makes the decision if those things are really going to happen. I can live with disappointment but disappointing others is much harder on my heart.
I'm feeling weak again like I just need motivation but everywhere I look I can't find it. I need to step things up this year and take things seriously but when you struggle to breathe everything seems impossible.
So my goals for 2013
* exercise to built strength and stamina and a few muscles wouldn't hurt either
*gain weight but good weight
* sleep less but take more naps after I have accomplished any of the above
* dance classes for the wedding
* be more aware of others and there issues and struggles
Most importantly make memories that are worth remembering