part 2

As I suspected I'am a super hero. 

I knew I had pneumonia and my X-ray confirmed it. I can't explain the feeling of knowing something is wrong with your body it's like a whole different sense. It's weird but I'm glad I have mastered my super hero skills. All I need is tights and a cape (hint! hint! I want a cape!) 

My lung function took a hit as I knew it would. 45%. The lowest I have ever been. It's hard not to take that number and not let it consume me. It took a lot of me not to cry when I saw that number. That was 3 weeks on ivs. Talk about a blow to my ego and lungs. 

Fast forward to now and numbers are up to 57%. After 4 weeks of ivs 2 oral antibiotics and a round of steroids. We're giving my body time to get all the medicine out and let the kidneys and liver detox and we will start over in a month. We will just hope for better results the second time around. 

I'm struggling friends...I just can't keep doing everything I'm asked and keep going down hill. I'm trying to find patience in this mess but all I'm coming up with is anger and frustration. I get like this at times. You have to loose yourself today if your ever going to have it all together tomorrow. 

It's Christmas time and I wish I had joy and all that crap but I don't have it I'm just glad to be here and that's good enough for me. 

Peace love and hello kitty 

Xoxo Jess 

To be continued...

Fighting to live is the only thing I know lately. I see the way this cough makes others stare, maybe out of pity or fear but the stares are always the same. I pretend like it doesn't bother me but it does. I always wonder what they want to say to me? I wish they understood the hurt behind these eyes and the pain in my voice. I'm just trying to live a normal life. 

I see 50% lung function on my printout and part of me wants to scream but I mostly want to cry. If this is 50% I don't know how I will handle 40% or 30% I'm just not strong enough. My body can't handle those numbers and I don't think my heart could either. 

I'm having trouble with my port and I need to see if the infusion center can get it to work tomorrow. If not I think it's possible I'll just throw a hissy fit; a full blown kicking the legs flapping of the arms crying and being un controllable mess kinda hissy fit. 

I hope that doesn't happen for the sake of others and for workers who surely will remember me next appointment . 

If I see pneumonia on my x-Ray I'll definitely feel like I discovered my magic powers...being so in touch with my body it tells me when there is a problem and what to do. If that's the case I'm going to need a super power outfit with a cape ( I have always wanted a cape)

So tomorrow it could be a really ugly day with tantrums and body limbs failing and tears.  Or it could be the new beginning of a super cystic fibrosis super hero who uses her powers for good and has an amazing cape. 

I'll let you know how the day goes.... 

   TO BE CONTINUED 

Today I'm thankful....

I'm thankful for so much. I sometimes think for such a lite girl I have so much to be thankful for and I have more then what I deserve. 

I'm thankful for the air in my lungs. Even though I struggle at times I'm happy to breathe. I know others are struggling with so much right now and even though I don't always say it I'm in the same boat too. 

I'm grateful for my mom and dad who are supportive and take care of me when I need it the most. For there constant love and affection they give me everyday. I'm sorry i cause them pain cause I know when I hurt they hurt. 

I'm grateful to my husband who has shown me many times over and over that his love is unconditional. I'm in awe of his love and dedication to me. I'm forever grateful for his love. 

I'm grateful for everyone I call my family. They are loving and generous and always support me; but more importantly they support each other which means the world to me. Never stop loving each other and taking care of each other because that what MY family does.

I could go on for awhile about all the things and people I'm thankful for, but I won't drag this out. 

Lastly I'm grateful for another day to live to love and to experience all the joys in life. I hope whatever you did today and whoever you spent it with you gave a moment of thanks for living this beautiful life. 

Peace love and hello kitty to all!

When cf is cured...

It's unbelievable how you can connect with someone you have never met; but having cf is a bond that ties us together. 

I have some friends online who have cf and a young man posted this and it spoke to me and many others too here are his words: 

    

Amazing how someone you don't know can speak right from your heart. Thank you Bryce for your amazing words. 

Home is where my heart is

Growing up is something I never thought I'd experience. Being a married woman is beyond anything I thought I could accomplish. But having a home? Never thought it was in the cards for me. I was wrong. 

Turns out the higher powers wanted something greater for me. Matthew and I are currently in escrow for our first home. It works out that a neighbor on my street wants to move but wanted to give the house to someone she knew would appreciate her home and cherish it. She lives 3 houses away from my parents. Wow. Close enough for comfort due to my lack of Health and Matt's demanding work schedule. It's something I never thought I'd have. My very own home. 

It really shows you Cf can take so much of our lives and consume it but really it's possible to achieve your dreams and ambitions. 

Bride with Cf

Being a bride and being a bride with cf. 

I can't help but find moments where my mind wonders. This is the most important day in my life. But how much of having cf changed what this day is about. 

I wouldn't be concerned about the dress in the aspect of it being heavy or bulky. Without Cf I would of picked something beaded and heavy  with crystals. Bling is better

I would probably wouldn't of picked a small venue. Because if I didn't have cf I would of gone to college and had a job that I made lots of friends. I wouldn't have a small bridal group cause id have more friends who took interest in me and enjoyed my humor and kindness and not get distracted with the responsibilities of being healthy as my only priority. 

I wouldn't have to pack a breathing machine and cough suppressant. Instead of praying for good weather I pray for strength to get through the day without making me sick or causing an infection that could turn into worse.

The people I wanted to attend aren't out of town or working they are in heaven when they should be my special guests. Stephanie would be

My 4th girl standing by me. And Megan would have flown to see me walk down the isle and we would dance until we couldn't dance. My sweet Maggie would be there too to make it complete all my cysters together on my special day. 

This day is a day I have dreamed of but I never realized how much it has had to change just to accommodate my cf. So Matthew and I will become one and cf is our baggage that we will carry together. Both our burden

Happy Birthday Maggie

Dear Maggie,

Its been a long time since we have talked, but don’t think that I have forgotten you…how can I forget my first angel.

            9 years you have been in heaven. How could it be so long? How is It possible to continue 9 years with out you here?  Today is your birthday you would have been 25. Wow the big 25. I think about the last time I saw you…it was your sweet 16 and you were beautiful and so happy to have everyone honor you and celebrate such a special day with you. That was before cross contamination was an issue for us CFer’s and i regret not giving you a huge hug and telling you how much I looked up to you, and how I looked to you for strength. I guess some thing never change because I still look for you for strength for comfort and even for guidance.  Every year I see your Grandpa talk about you and how much he misses you and every year it breaks my heart, the love your family has is amazing but its their strength that’s admirable.

Sometimes I cry for you. I cry for Megan and Stephanie too. I wish you all were here with me and that I could experience life with you. You were deprived of adulthood and how is that fair? I’m older then all of you, it should have been me who missed out on these things. In life that’s the order and that’s the way the world works and when we go against how nature is supposed to work…it is wrong. Parents aren’t supposed to bury their daughters and Grandparents aren’t supposed to watch their grandchildren die that goes against nature. Look at the damage death does to those who are taken to early; their families are hurt and left un-whole for to long until everyone meets again. Its wrong.

No one ever really dies as long as they took the time to leave us with fond memories.  ~Chris Sorensen


So happy birthday Maggie,

 Hugs

 Jessica

We become one

22 days till two become one. 

 What an amazing thing to have coming up! I never thought I'd experience it and as I'm picking out music for my entrance or for the cake cutting I can't help but to stop and breathe it all In. It's real. This is really happening to me and I'm going to live to see a monumental moment and I was always told it wouldn't happen. 

I'm fighting to make this a healthy time in my life just for this moment but I'm starting to realize I can't control the outcome of certain things. They are just bigger then me. I'm going into my 3rd week on iv antibiotics and as much as I want to feel amazing and normal I don't think my body has that ability anymore. So I'm coming to terms with I'm doing all I can and I have to accept the fact I can only control so much. The rest is beyond me. 

In 22 days ill stand next to two of the most important men in my life. To one I'm his little girl his pride and joy and to the other I'm his future and his love The beginning of our family starts that day but the love of our families will surround us in ever way it will guide us when things get hard and comfort us when we are challenged by the new life we are trying to build.

But though it all love will prevail

 

Is it okay?

Is it okay?

Is it okay to not feel good?

Is it okay that I just want a break from being sick?

Is it okay I feel like screaming at the thought of another round of ivs?

Is it okay that I feel like I can't handle being sick again?

Is it okay if I just want a break from everything cf related?

Is it okay if I cough so hard I throw up and cry?

Is it okay that I cried cause today you would of been 18?

Is it okay that since you have been gone I have no desire to fight like I use to?

Is it ok to just cry at the friendship we would of had and the memories we would of made together?

In these tears I cry for you I cry for everything you were and everything you could have been. I cry for the things you never got to experience and the awful things you did experience. The pain you left and the love you left behind

It's okay to miss you and cry for you cause I know I'll see you one day. Maybe in heaven or maybe in my dreams but someday we will meet again and that brings me what little joy I have tonight to the surface. 

103 days

How is it that in 103 days I'll marry my best friend? We have been waiting 7 years to plan this joyous occasion and it is going to be here sooner then we realize. We just registered today and even though we are planning on staying with my parents for a little after we get married it was a challenge to register but it was fun. It made the whole process real. We're moving along in the whole process the next big thing to tackle is invitations. Wish us luck. 

 Xoxo 

My time on the juice...

I find myself weak these past few days. I feel like I can't catch a break. 2 weeks on Ivs  and I have had issue and issue. Meripenim made me extremely nauseous  so after the first week we decided to change because numbers weren't up and on top of the side effects it was needed. Zoysn will take the place. Knowing that zoysn can cause c-diff we follow that up with an oral round of Vanco to possible stop the C-diff  after trying that we get the bubble guts and bloating with the lovely loose stool. I'm at my wits end.

 

Round 1 Tobi Iv every 24

               Meri Iv every 8 hours

               Bactrium 2 tabs twice a day

      Results: nauseous to the extent we need new abx for the side effects and also little to know improvement. 

Round 2. Tobi   Iv every 24 hours 

               Zoysn Iv every 8 hours  

             Bactrium 2 tabs twice daily 

       Add Vanco to possibly help with   possible c-diff infection 

       Add short round of steroids. 

          Results: cough is better but having extremely uncomfortable GI issues

Round 3 Tobi Iv every 24 hours

               Ceftazidime every 8 hours

               Bactrium 2 tabs twice a day 

     Results: even though its soon I think good things will happen with this round. 

With a round of meds like this it makes bouncing back emotionally hard. I'm drained and loosing hope that this might be working. If its not working and we see no progress I fear this is the normal. 

It would make it easier if we could pause the sickens even if for a day so at least once in awhile we can feel some normalcy. 

I just need to feel better I need to feel useful to others and not a burden. Maybe not this week I can achieve those things but hopefully at least 1 of those is in my near future 

Everything is hard when you don't feel good; everyone is even more annoying. I think If I don't get better soon my family is going to kick me out for being a pain in the ass and emotional unstable. So I might be looking for a place to stay just till the meds straighten out -jk but keep it in the back of your mind just incase haha

No peace tonight...no love tonight just hello kitty xoxo

Same page

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

I see alot of my grandma in me. I think we have the same eyes and the same spirit. I feel her sometimes when I'm weak and I see her in my mothers face. I never met this woman I call grandma but I know I love her.I love when I hear stories about her that make me laugh but more importantly I love the look on my moms face as she reminiscing about the most import person in her life. My grandma was a fighter and I think I got that fighting instinct from her; but clearly it's my mom who brings it out in me. The thought of leaving my mother alone breaks my heart and gives me motivation even when things get hard. Happy birthday grandma Phil xoxo

lesson learned

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

a preview

here are the previews of our engagement photos.

we are thrilled and cant wait to see all the photos.

hope you enjoy our preview and we cant wait to show you

the rest once we get them.

May 1st

It's May that means its cf awareness month. So here are 5 things I think you should know about cf
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
Xoxo Jess

Bosco Booty Butt

Today was just another day really. I have good moments and bad. I enjoy getting out if the house to run errands but I'm not to fond of the coughing attacks I get getting in and out of the car. I'm constantly asking Matt to slow down. But I like our time together I'd take that over anything. I'm in bed really uncomfortable my tummy is unhappy and my chest is heavy and the coughing is really getting old. Only good thing is Bosco he's laying next to me right by my side almost like he knows I'm not well.

*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

We always win

I'm in pain tonight. I can't get comfortable every position i lay in my lungs ache and throb. It's a dull pain but its enough of a reminder to make me lay awake.
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.

Just lil ol me

I have a tendency to talk to much. The quietness of a conversation makes me uneasy. I usually say to much and it's always the wrong thing to say.

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.

17 and angel wings

“Death ends a life, not a relationship.” 
― 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.

Dear Stephanie
   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 

Just an introduction...

I will write a better more through interdiction soon.

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.

how do you not worry?

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

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