Saturday, October 18, 2014

How did this happen?

Coming to terms with where I'am health wise is kinda like a kick to the gut. You see it coming and really you could of done something to prevent it but all your left with is the pain and realization this is your health. 

Traveling use to be so easy. I could travel with the best of them. I'm an easy traveler in the sense that I go with the flow. I can be in a cramped space and usually get comfy. 

As I'm preparing for my 10 day trip I'm seeing new things added to the list. The newest and oddest things Is oxygen for the plane ride. Plane rides just send me in a downward spiral and usually result in coughing up blood. And since my last episode of coughing up blood landed me in 2 different emergency rooms I'm a little nervous flying because as any cfer will tell you lung bleeds are unpredictable and are scary as shit. So I'm trying to rent a personal oxygen concentrater to help get me to my vacation. I stopped and asked my mom when did this happen? When did I become this sick? I'm dumbfounded to say the least but I'm confident that the oxygen might bring me comfort and even help make this trip enjoyable. Please keep good thoughts in your mind and send them my way especially because I leave Wednesday am and in a waiting game for the dr to send the prescription over on Monday which leaves me little time. Without the oxygen things should be okay but it would make me feel better about traveling. So please send me positive vibes and well wishes. 
 Love to you all 
    Peace love and hello kitty 


Wednesday, September 3, 2014

Brother & Sister

I believe God knew what he was doing when he put Aaron on this earth before me. He saw what this child was capable of and saw the man he was going to be. So when I came into his life I was paired with him because everything he is exactly who I needed to have around me and influence me. Having cf and having a sibling is challenging as many parents will tell you. But this brother of mine was built to handle it all. The attention that was often shifted from him to me in a blink of a second. Brothers are your best friend that god picked for you. And with my Aaron he knew what I needed. Someone strong and kind. Thoughtful but tough. So many times I think of a world where we aren't together and it breaks my heart. I don't remember a time where I didn't have him. There were times when he was my safety blanket and my comfort. To know my brother is to love him. He is someone you see in a room and your drawn to him and his personality and witty remarks. Having loved my brother all my life is a privilege but knowing he loves me is unexplainable. I see the man he is and he makes me proud. I tell him that often and I'm sure he gets tired of hearing it, but I speak the truth. When I read of little George passing my first thought was of my brother. How my life would never be the same without him. So as any loving sister would do I texted him and told him I loved him. His response "yaya" in perfect form that is my brother expressing his love. 

I think of little George and the brother he must of been. I imagine he was just like my Aaron. And maybe I'm like Christina, who had a love for her brother that was strong and unbreakable. Now I think of one without the other I feel incomplete. To not have my brother beside me is painful and just writing this my eyes swell with tears because I know how much it's going to hurt to miss him. But I hurt for the pain he will feel when I'm gone. He will no longer be a brother. Just as parents who lost not one child but two will never have a full heart as each of there children took a piece of there heart with them to heaven. But together brother and sister will meet again and be reunited with the best friend God made especially for them. 

I want you to know about little George and Christina. Both fought hard against cf. Living the life that comes with this disease is no easy task as I'm sure many of you already know. Christina was waiting for her 3rd set of lungs when she bravely moved up to heaven breathing freely and feeling no pain. She left behind a husband and parents and of course her beloved brother little George. He had gotten ill very quickly and was evaluate for a lung transplant and received it in the nick of time. Sadly the lungs weren't a match and failed very quickly. As this is all happening. Mr. & Mrs. Gabeheart are burying Christina and morning the loss of a beautiful soul who was deeply loved by all. Meanwhile little George received a second transplant and many obstacles that complicated things from the first set of lungs to the second, little George joined his baby sister in heaven. A beautiful reunion that so many found comfort that they were together again. This family is unbelievably strong but they need your help. As anyone who knows anything about transplants there are a lot of fees and expenses that you are responsible for. So please do 2 things. Pray for there strength and for peace for many days and years to come for this amazing family. Also please help them by making a donation, they have so much to deal with that the financial burden shouldn't be something that they need to worry about. Any amount helps. I will be donating because everyone on my friends list is someone I know and love. I hope that if this was someone writing to you asking to help my parents that you would honor them in giving anything financially and giving them some good thoughts and prayers.

please take the time to pass this on, it means the world to me and so many others.

Tuesday, July 22, 2014

A work in progress

The day I became terminally I'll is still a day I remember. I have an odd memory and seem to remember many things. But this is vivid. Sitting with my parents in our living room and having then tell me things were going to change. I had things I had to do daily now. If only I knew the storm that was coming. I remember not being phased but in hindsight that's probably best. It took one doctor 2 sweat tests and 2 defective genes to make me terminally Ill and flip my family's world upside down. Just lil ol me is responsible for so much damage and I didn't even do anything, I was born with it. Damage can't be undone just like words can't be unspoken. You learn to cope and make adjustments but since that day life hasn't been the same and neither have any of us. We accept our new reality with bitterness and resentment. (maybe not everyone just me) after bitterness and resentment came denial and anger followed by acceptance and understanding. I was 10. These emotions and feelings are way beyond what I was capable of but I managed to get by. 
  You learn to accept that this is your life now. You are different but not in the way the other kids see you but in the eyes of the doctors who look at you and see so many who came before you and had no chance, but you could be different right?
Learning to do things you don't want to so you can live is a reality check and even at 27 I still am learning how to master that skill. Poorly at times but I'm a work in progress. 
I remember the days before treatments and pills hospitals and ivs. I wish I appreciated it more now that I'm looking back. I had 10 years to be normal just like everyone else but I guess I was just born to be different. We're all born but it's up to us to find our purpose and I haven't found mine yet but I'm still looking. I just hope I fafill whatever it is. To be a disappointment would be a disappointment to myself. 

Growing older with cf means your cf grows too. Pills and treatments ivs and shots surgeries and tests. They follow you like a trail of misfortune. One after the other each one becoming part of a life you believe to be normal. After awhile you forget what normal is and even what normal looks like. So many times iv stared at myself in the mirror looking over my face and body and I don't see the same person I saw when I was 18 or even 21. I see this person who looks like me but has been through so much pain and hurt. I see the darkness around my eyes like a reminder of the nights I couldn't sleep and I see the so much of the person I should of been, the person I could have been if I wasn't ill. I don't know how to be anything but sick, that's what my life has been made up of for so long that I don't know how to function on a day to day basis. Perhaps I thrive on iv schedules and antibiotics. As the poison flow through my veins I find my purpose and my life line into who iam. Who will I be when my cure comes? Maybe I'll be able be the florist I always wanted to be or perhaps I'll just live life like I have never lived before and when I look in the mirror I hope I still see the struggle I went through but it's just a reminder of how far I have come and where I'm going. 

Thursday, June 5, 2014

Beautiful souls gone to soon

There are people put on this planet that are truly beautiful souls. Their smile is infectious and their love for life is contagious. They are the kind of people you find yourself drawn to. Knowing them and loving them make you a better person. 

Having people like this in your circle  of friends is life altering. The love that they project is empowering and even if your relationship is only one that's online. 

Having cf and having friends online is really as good as it gets. But you develop such a deep and strong bond. But nothing compares you for the loss of these remarkable souls. 

But when it rains it pours. Because not one beautiful soul has returned home but 2 great woman. Both married woman who left behind devoted husbands who are devastated to have lost the love of there lives to such an ugly disease. 

Mothers lost there precious daughters who they spent so much time loving and protecting. 

Dads lost there precious baby girls. 

But what kills me is brothers lost there baby sisters. Having an older brother myself it hits my heart hard. My brother was/is my first best friend,my first protector. When something happens I want him to know. I want to tell him about my 
crazy days and tell him my bad jokes. I think when you loose your sibling especially when your close you will never be the same and I don't want that for anyone but especially my brother. 

When so many people pass because of cf you never get use to it. You never become numb to the feeling of death. In fact I think you become more acceptable to the pain and hurt.

Sometimes I just don't want to know anyone else. I don't want new friends and I don't wanna get attached to others because when they leave it hurts and I sometimes wonder if someone can reach a point where they can't handle anymore hurt. 

So to sweet Christina. No one lived life the way you did. You lived it to the fullest. It is obvious you are loved and will be missed but mostly I think you changed so many lives. You loved life and life loved you back. 

Dearest Heather, even though we only met one time on accident. I felt a connection you. Going to the same clinic and having the same doctors. But the more I got to know you the more I respected you for your faith and uplifting attitude. 

So sweet cysters you lived beautiful and full lives and will never be forgotten your legacy will be one that lives forever in so many hearts. Breathe easy 

Tuesday, May 6, 2014

Grab a tissue mama

And I'm sure the view from heaven
Beats the hell out of mine here
And if we all believe in heaven
Maybe we'll make it through one more year
Down here

When I have a bad night this song hits me hard. Makes me remember so many that have gone before me. I miss them everyday and sometimes i get so tired of the hurt and pain. Not just for me but others around me that feel it to. 

There are nights like tonight where I keep thinking of there faces and I miss there friendships. I miss having people close to me that understands what I'm feeling but I can't bring myself to get to know more friends with cf because the pain of them passing just kills my soul. I'm accepting the fact I'll never have friends like that again and I grieve for them.

Megan my beautiful friend was so thoughtful and full of love. She loved her family and her god babies. She had a real love and passion for life especially after her transplant. I feel like in that short time she lived life fully and completely. I often think of our conversations about a cure and dancing. Megan was someone I trusted and knew I could ask her anything and she would answer honestly and truthfully. 

Maggie was a spit fire. Had the attitude that I admired. Brave and independent. Strong willed too. I remember so vividly her sweet 16 and I kick myself for not staying longer to visit with her, she was with her friends and I felt she should enjoy her day and not have to pay to much attention to me. Let her focus on her day. When Maggie passed I was numb. I didn't cry I told myself I wouldn't cry. At her funeral it was all to real. I remember going to seeing her and she looked beautiful and peaceful. At rest after a long fight. When they closed the casket I lost it. In the one moment it all was so real. The tears never stopped flowing and I have never cried so much in my life.  I felt depression over coming my body and mind and spirit. Maggie was my first real friend with cf to pass and it was something I carry with me to this very day. Maggie is my first angel. And she has guided me a few times and I'm forever grateful to call her my friend and my angel. 

Stephanie. The girl who stole my heart. 17 years old. We met though a friend who gave her my number to text just to have a friend who was older. And even though I was close to 10 years older then her she wS the one who helped me. She gave me courage and strength and she gave me a friendship I always wanted. She was my little Cyster. I worried about her. I would do things just to make her happy. I would send her box full of stuff during her hospital stay because I wanted to see that smile even when she was struggling she always had a smile. A passion for her family her niece and her boyfriend who was the love of her life. My regret Is I never said goodbye. I couldn't see this girl who I admired and loved like that. My own selfish reasons.  

Cf is unfair it's cruel and it ruins lives. 
  I miss having cf friends but the pain is to much to bear. When they pass a piece of my heart goes with them. 

Tonight is a night where hopefully  I'll dream of them running and having fun and I hope when we meet I can finally have my friends back. 

Love love love 

Thursday, April 24, 2014

Jessica Sweeny/ update on Kyladco

Just because we never met doesn't mean I don't hurt for you. For your pain and for the life you will never experience. 17 is to young. To young to live most your life in a hospital, to young to feel your body deteriorate right before your eyes and to young to feel so much pain.

Jessica Sweeny earned her angel wings. A beautiful girl a beautiful life gone.

CF has no limits on who it takes. It will take mothers and fathers sons and daughters brothers and sisters it doesn’t discriminate. So tonight a mother is longing to hold her daughter one last time and my heart hurts for that family and every family before her and can relate to the pain of loosing someone they love. Even though I used the term “loosing” as in the are lost….it couldn’t be more further from the truth, they are right where they should be in heaven with the other angels and warriors rejoicing in there new found freedom from the world of being in the hospital for weeks on end. Needles and Ivs Pills and pain all go hand in hand in our world.

When someone with CF passes a piece of you hurts for them for there family and loved ones. A piece of you goes with them.


Sometimes you don’t get what you want but you get what you need.

I wanted to feel like the new medicine was my hope in a bottle something to hold onto that my life could have some normalcy. Instead I needed to know that regardless of the outcome of all this I will be okay.

I accept that this is all beyond my control and as much as I hoped and prayed it would work and be my saving grace im starting to get this gut feeling that this is as good as it gets. I could complain but what good would it do? Im able to live a relativtly normal life and there are some days when I really feel decent but there are also days when it gets hard to do anything…physically and emotionally . Having an invisible disease doesn't come with invisible pain or heart ache. I'm hoping I will soon have better days and this will all be a thing of the past. hopefully.

Tuesday, March 25, 2014

Just an update

The last few days have been sucky, some tummy issues are something I'm not use to and I hope it stays that way. 

I haven't noticed any changes and honestly I'm worried I might be inspecting and analyzing  every cough and ache and pain to much. 

There are times when Matt and I will be talking and we realize this could be the new beginning for us. So many opportunities can really happen if things start to work the way we hope they will. Maybe traveling and starting different projects and finishing things in the right time instead of waiting till I feel good. The things that could be possible for me is overwhelming but like I said high hopes comes high disappointment. 

So as always it's one day at a time enjoying what I can,when I can. I hope you all are well and good things are happening for you. 

 Peace love and hello kitty

Saturday, March 22, 2014

This is the beginning part 2

Having big hopes is usually a good way to have huge disappointment. But I'm calm and optimistic. 

I truly have an amazing clinic and they are proving it every day. After months and months of repeating the same pattern of a round of ivs followed by a few weeks of normalcy I find myself back on ivs in less the 3 weeks after coming off of them. Clearly the ivs aren't working long term like they should but sadly nothing short of a transplant could fix that. 

My brilliant and amazing doctor has gone beyond what I expected and has started me on kayladco. Which if your aware is gene specific and sadly I do not qualify but after writing  to the pharmacy and doing some magic the little blue pill arrived. 

We're conducting our own study to see if this is possibly away to help make my quality of life better. So after a full day of testing I was given the okay to take the magic blue pill. Kayladco. We have no proof that this will work but I believe in my heart it will; it has to. 

This could be a new world for me. Everything I have read on this medicine is nothing short of amazing. I just hope that it works for me. So please keep me in your thoughts as go where no other cf patient has gone. (J/k I'm sure I'm not the first.) 
 Here are some photos from the testing. It was a lot of breathing for one day. 
 I will keep you up to date on any changes health wise but right now in just thankful for my insurance and my doctors and whole staff at UCSD

 Tonight is the perfect night for 
    Peace love and hello kitty

Thursday, March 20, 2014

The beginning

Today is the new start of a new life. I did some testing today and I officially start kayladco. I'm beyond excited but worried too. I don't have the proper gene for this therapy but we have hit a wall that we are running out of options. Ivs are not helping long term. It's frustrating but I have complete trust in my team. It was a long day of a few testing but I'm wiped out and i will blog more soon. 

Tuesday, January 28, 2014

Acceptance?! Kinda not really

Accepting the fact that your not able to control your disease is a hard pill to swallow

Realizing your at the mercy of cf and everything it does to you and your not able to make the improvements in your health like you use to. Learning to cope with your new baseline is beyond disappointing in so many ways. I become disappointed in myself, my health team,my decisions..shoot at times my life. 

I always knew this was a progressive disease but I started out so strong and now I see the toll this has taken on my body. Never thought I'd be where iam today

Even though it sounds like I'm sad I'm really not. I understand it's just the way it is... I can only control so much. It makes me enjoy everyday a little more because I never know what tomorrow will bring. 

I'm laying In bed at my parents cause of my iv schedule it's hard to handle it myself and get the rest my body demands. My husband is working nights and quite frankly I don't like to be alone at night. That's when my mind gets the best of me. My demons show up and sometimes they are stronger then me and take over my mind. It's easier to be surrounded by my family and dogs. Even if they fart a lot. (The dogs not my family)

I know every cough my mom hears even from a dead sleep. That's a cf momma right there. A damn good one too. So when I sleep over I sleep great but her on the hand sleeps with her ears listening to every cough and noise. Uneasy sleep. But a complete feeling knowing we're all together. 

Peace love and hello kitty to all
 And to all a goodnight 

Sunday, January 26, 2014

Can I please have your attention...

Attention everyone; I'm trying to get fat. 

Please bring all doughnuts cake and carbs to my home. I currently am taking donations in the calorie department and I'm also seeking any one who would like to donate some weight to me. Just come on down!

I wish it was that easy. 

I have gotten myself in trouble. I spoke my opinion at clinic last week about finally stepping up and starting my tube feedings again. It's been close to 18 months without using then religiously. My weight is solid at 110 but I'm struggling with my lungs. They are hovering around 50% to 60%. That's unacceptable. Not only is it low numbers for me but it's also hard to function. I'm gasping for air constantly and I have little to no energy. So why not get fat and see if that helps. What's the worse that could happen?

 ( blood sugars go crazy or late night tube feeding leaking or the awesome over fed feeling that leads to throwing up. Then you cry cause you just threw up all your calories.)

This decision was hard and it's a true sign that I'm getting older and making decisions based on what's best not easiest. Hopefully I can stay in this frame of mind and get the weight back on. 
Wish me luck and lots of pounds!

*saying "getting fat" or the term "fat" is my sad attempt at humor and by no means do I think by doing my feedings I will get fat*

Sunday, January 19, 2014

2013 compared to 2014

What a difference a year makes. This time last year I was admitted for a lung bleed that landed me a hospital stay for my 26th birthday 

Today on my 27th when my head hits the pillow I will be in MY home. With my husband.

I spent the day surrounded by my family enjoying my new home. Showing everyone all the work everyone has done and the gushing over how hard they worked to make this house our home. 

On my 26th birthday I sat in an empty hospital waiting room with my closest family and ate cold food but it was happy times because we were together. I feel asleep that night hooked to an iv pole and a bed that wasn't mine. 

I'm amazed at the difference a year makes but I know it could change tomorrow and I could be back in the hospital with out any regard to my personal life. But health trumps all. 

I'll fall asleep tonight humbled by the love I'm surrounded by. The opportunity to have a home and feel some independence is something I never thought I'd experience. But as with many things I know it isn't promised for forever. 

The home I live in is definitely built and surrounded in love. I find myself at times stopping and saying "I'm a lucky girl" and with tears in my eyes I know it's all mine and thank god for the love of my family. Without them this life wouldn't be what it is today. Perfect. 

Friday, January 3, 2014

Your love vs My love

I wrote this Christmas night
 Better to post it late then never. 

Dearest Matthew 
Your sleeping like a rock and I'm struggling to find a position that doesn't make me burst into tears. I hear you snoring and even though it's hard to get use to I love that sometime I enjoy the comfort in hearing you sleep even if it's noisy. 

I'm sorry I have been unwell lately and even though you say it's not something I need to apologize for I need to say these words regardless. I'm sorry for when I'm not feeling well and you take the brunt of the stress and fatigue.

It's easy for me to look at myself and see very little but I sometimes I don't see the wife you deserve. I just see a broken girl with a broken soul trying to love someone who loves in the most deepest and unconditional ways possible. 
Being sick is our biggest burden but it's not your burden it all falls on me. 

I struggle to be the daughter your parents deserve and the sister your brother and sister need. I struggle with being the wife you deserve.

I'm tired of telling you I don't feel well. It makes everything feel so depressing and makes everything so much more negative. And that's why when you ask how iam it's easier to lie and cover the pain because I don't want you to worry. 

I know when our families look at us they see such different things. Your family sees me as this "well" looking young woman but they don't see the struggle. So when I come up missing in family events I hope they give me the benefit of the doubt. I choose not to let your family see me weak. Iam more then a weak person and I hope they see how much I do love being part of their family. 

My family looks at you and sees love beyond all limits. The way you are to me makes them proud to have you as there family and I just proud that you are mine. 
I have disappointed you again by not coming to Christmas dinner tonight and I 
know this won't be the last time. 

Sometimes I wish I was able to pick my good days and bad days. You deserve to have good days that benefit you. 


Search Away

Blog Archive

Follow by Email