today

Survivors guilt is real. Today I felt it’s presence around me all day like a cloud of gloom. Sitting at the hair salon listening to all these woman chatter and talk yet I couldn’t understand a single word they were saying. It was like in the Charlie Brown cartoon. Sitting in my chair I never felt so alone. I wanted to scream just because there was apart of me that felt like it wasn’t all real and maybe it was just something I was imagining. He is gone. She is gone. Two right after each other is almost unbearable, but making their death seem anything less then tragic is not fair. Both wanted to live, both fought hard and won the battle and their victory is peace and comfort for the first time. I often wonder if I’m that strong to continue fighting for so long knowing how strong and brave they were. I guess the only comfort I have is I have lasted this long.

Dear Aaron

Dear Aaron Today is your 33rd birthday. That’s 33 years on this earth you have been kicking ass and taking names. You taught me well big brother. I know you probably won’t read this and that’s okay, i hope you already know all this. Having an older brother is having a best friend all the time. Totally hallmark, I know...but they speak the truth. Your unwavering support has been nothing short of amazing and sometimes when I get to my lowest lows I think of you and how you wouldn’t have a sister anymore and how that would affect you. I think of what I would do without you and my eyes begin to fill with tears because my love for you is unlike any other. Your support in this new journey is something I can’t put into words but your actions and body language tells me enough. I don’t love anyone the way I love you. Your always by my side. Ever since we were babies it’s been me and you. Aaron and Jessica. You have grown to be strong and smart. Independent but still remain humble. Something I think many people could be more like you in that sense. Your love for your family is evident on your skin and in your heart. You my dear are a pure and gentle soul. I don’t worry about you in the sense you are destined for great things. Your skills in everything you touch is amazing and like I say one of us is smart (you) and one of us has the good looks (me). I joke with you about being fat and you constantly bug me about me being to skinny and not eating. You have this sweet devilish look in your eyes that tells me you care but you can’t say it and honestly you don’t need to. I know. We all know. Your the a strong man just like daddy in every way and I think that’s something you should be proud of, cause you know I’m proud of you. We all are. So on your birthday we celebrate you in every way. Happy birthday to my chubs

its not easy

after spending almost 3 weeks in the hospital I'm adjusting to home life much better and I'm not quite sure why, but ill take it. I have bad anxiety at home, I panic. The hospital is a safe place. I know if I need major life saving efforts I'm in the right place, but when I'm in the hospital I long to be at home. Its a challenge. Cystic fibrosis is a challenge. One week its go go go on the transplant talk and testing and the following your being discharged. its scary. I have an issue with hemoptysis when I get these exacerbations, this time after getting transplant involved we located the general area where the bleeding was and was moved to ICU to be closely monitored. Thankfully the hemoptysis resolved on its own without any intervention. But the concern of the transplant team was that I would get a bad bleed and bleed out...thats where transplant comes in and is the back up plan. As of now I'm not sure where I stand on the transplant list evaluation, but I know I'm thankful to sleep in a normal bed without the comforting sounds of the hospital in the back ground. Im managing and taking it day by day as I get flash backs of the bleeding and the feeling and it scares me and sends me in a panic and I become anxious. So day by day I work through the emotions of everything and how fast life went from okay to transplant. I also know that chances are I will go back to that place eventually and I just want to enjoy my good days and even my bad days I try to find the good in those too. its just not always easy. but life with cf isn't easy. thankfully I'm realizing how strong I can be.

just a hello

hello all my friends, soo much has happened that Im still processing it and working on a blog to explain whats happening. xoxo

Gallbladder

4/3 I called Matthew at work almost in tears asking him to come home from work, I needed to go to La Jolla to the ER. I was having pain and nausea from my gallbladder that was way to familiar. We get into the truck and by the grace of god we made it without me throwing up everywhere although in all honestly there was some major dry heaving. Of course the ER was packed, listening to people talk amongst each other some have been waiting for 3+ hours. After 3 hours we finally were called back into a gurney in the hall. gasp. I know thats like a major no-no but giving the situation a gurney in the hall was like a castle in the sky to me. Thankfully a Dr came by quickly and we got a plan in motion...testing pain and nausea meds fluids. Shortly after midnight I was placed in a room and after 1am they told me that they were going to admit me. 4/4 Early wake up in ER room with blood work. Still downstairs and waiting for a room on 2 west. ER is busy and I found it easy to pass time people watching and seeing some crazy people. 4pm-Finally up to a room on 2 west, my home away from home, I get settled and get told the amazing news that after 6 months of begging and crying and complaining they finally agree to remove the gallbladder. I have no idea what made them decide to finally take it out but I was so excited to finally have this whole nightmare close to an end. 4/5 Around 9am I get official word that the surgery is happening today, we talked about the surgery and what could happen if when they get in there things are worse then they expected and what the risks are. After a crazy long wait they took be back to have the process started. I was on the table when my Dr came in and told me he was sorry but they would have to do it tomorrow cause he didn't have the second set of hands he had planned on, I said I understood but really I was crushed. His phone rings and he excuses himself to then come in about 2 min later and say he found someone and that it was a go. I was so relieved. Surgery went well and I was back to my room about 9pm. 4/6 After some struggles with pain management we finally had a routine down. They wanted to send me home, but I wasn't comfortable with that. So one more night was all I needed and I'm glad I stuck with my gut. I'm home and things are good, still taking it easy to be on the safe side, but even after the first say I haven't had any pain in that area. So now all we can do is wait to get back to 100% but honestly I don't even remember what that feels like. Im ready to enjoy summer maybe work on my tan and get some swimming laps in.

Iam Different. I look different. I Talk differently. I think differently. Having Cf gives us certain characteristics that we learn to adjust and adapt to. Bad posture, raspy voice, and clubbed fingers will give us away in a crowd. Our coughing is our calling card and is one identifying characteristic that we can't hide or suppress. So imagine the looks that we get even when we don't try, sometimes all we want to do is blend in with you and appear normal. I sometimes hate that as I'm getting older and things are getting more complicated in my life with my health that the severity of my health and the concern for the overall situation easily get overlooked or passed along. I wish the random people who stare and glare when I'm walking could see the struggle just to move and function to try and have some normalcy in my life. I dyed my hair purple. I think I love it. Now when people stare and I know they will,its okay cause its on my terms and I have accepted that I was made to stand out in a crowd. Im a unique individual and now I have the hair to prove it.

lots of love and hello kitty to all

Update

Its been so long since i have blogged. ill give you a little update text-align: center * Since September through February 2018 I have spent every holiday in the hospital. * In November I had bad pain/vomiting that was actually caused from my gallbladder * After a 2 week Iv course I had to have a drain in my side to help with pain and nausea from the enlarged and enflamed gallbladder. * Still waiting for surgery to remove gallbladder and still have the drain in my side. * After my last hospital stay February, I developed bad ptsd from previous hospital stay where I coughed up large amounts of blood.text-align: center * Also anxiety and panic attacks at night and have a hard time sleeping.

So My health has been very delicate. Its been hard on the health front because it seemed like everything was happening all at once and it has even brought up the conversation of transplant. Transplant. That single word is word invokes so much emotion. It will turn my whole life upside down. No one will ever be the same. Someone has to die. Their lungs in my body. Complications. Pain. and Excitement. The possibilities that could suddenly be real and at my fingertips. To plan for a future again and to think long term. it would be a second chance at life and the ability to truly live and make as much as I can happen. But it comes at a cost. Literally and figuratively But thats putting the cart before the horse for 2 reasons. - Im not quite where I need to be evaluated health and number wise - I already was presented to the board and was denied And I honestly don't know if transplant is for me. I have moments where I think yes of course how could I leave and not see everyone I love so much. I think about all the things I still want to do and experience. Then there are times when I'm tired of the pain and hurt, the struggle and the tears. Sometimes I don't think I have much longer left in me. I can only be so brave. So tonight I found what I have been missing for some time. My appetite. My appetite for life and for food. I have been enjoying my food and its safe to say that my insides definitely don't look like the healthy woman I look like on the outside. I enjoyed an amazing dinner tonight, a late celebration of my birthday. As I'm at dinner with some of the most important people in my life I felt so many emotions come over me in waves. I see so much love for one little girl, the love and determination that can build bridges. Hope that I will be one of the lucky ones. Tonight was perfect and if it was my last night on earth then when I close my eyes tonight and start to sleep I will be the luckiest and happiest girl on this earth and thats something to celebrate.