If I didn’t have CF

What if I didn’t have CF?  That is one open-ended question.  This topic for this post has been on my mind for a while now.  I just didn’t know how to go about writing it and then there was the whole coughing up blood thing that got in the way.

The “what if I didn’t have CF” question/statement goes way back to childhood.  I think I am just going to start to list things and elaborate when needed.

If I didn’t have CF…..

  • I would be able to run without even thinking about my breathing
  • I would be able to go hiking and see beautiful sights in the beautiful Smokies
  • I would have been able to go to school my senior year and not have tutors at home to graduate.  Although I did graduate with a 4.0 which I am proud of.
  • I wouldn’t have stayed with someone for way too long out of fear that no one else would love me because of CF no matter how bad it got.  I finally realized alone was better than being treated badly.
  • I wouldn’t have been label “the weird one” in school
  • I wouldn’t have to justify my skinniness to people as part of my CF and that I was intact NOT anorexic or bulimic.  Having people be jealous of my skinniness made me angry because there is nothing I can do about it.  Everyone has their body type, embrace the one you have!
  • I would be able to work and help provide to the family.  I did work in high school and after, thankfully enough to make me eligible for disability when the time came.  I just think about how much more debt we could pay off with a check from me and not my measly $853 disability per month.
  • I could have birthed children…most likely without medical intervention.
  • I could have not gotten attention for being the “sick girl” and maybe for being the “cute girl” instead 🙂
  • I wouldn’t have rushed into getting married the first time because I was thinking that he was going to be the only one to ever love me even if it wasn’t the best and I didn’t want to die not having been married.
  • I wouldn’t take it personally when someone chooses someone else over me for a particular job/activity/etc   Like to watch their kids.  I understand the sicker I get the harder it is on me so that’s not the issue, I’m speaking of when I was younger and in good health.
  • I wouldn’t know what all these fancy medical terms mean and have them done to me or had them.
  • I might be a nurse.
  • I wouldn’t have made some big decisions in life based on CF progression and where I would be in a certain amount of time in the future
  • I wouldn’t feel bad for taking attention away from my siblings because I was always sick.  It’s not the attention I wanted.
  • I wouldn’t fear getting close to people just to hurt them when I die. (BIG ONE) I have no choice in the matter, I was born with CF but everyone else has a choice to be in my life and the thought of everyone hurting and being sad when I die, pulls at my heart all the time.  I try to not let it get to me.  I am the type of person that gets close to people.  I have seen it the opposite way around, people don’t want to get close because they don’t want to think about or even deal with the inevitable….my death.  I hate that for them.  I think you should take all the time you are given with a person because when they are gone you will kick yourself and say, “why was I so scared of getting close.  I missed out on so much.”
  • I wouldn’t have all the extended family of nurses and doctors that I have now but of course I would like to have them on the outside of the hospital.
  • I wouldn’t have to think ahead when leaving the house to do errands of what I need to take with me to get me through and when I need to be back by for treatments/IVs/etc.
  • I could take a shower and it not wear me out to the point of wanting to take a nap.
  • I would be able to do yard work (again).  I love doing yard work.  I love getting my hands dirty and making something go from yuck to good.
  • I would be able to ride a bike with ease.
  • I wouldn’t be the reason we can’t make plans with friends.
  • I wouldn’t be the reason we have to cancel plans.
  • I wouldn’t feel bad not being able to commit to things for the simple reason I have no idea how I will feel at that time.
  • I wouldn’t have all of the amazing CF friends that I have.  It is hard to lose them but then time we have/had is worth it.
  • I wouldn’t have to worry about our kids hurting because of CF.
  • Frankly I could do anything without struggle.

I’m a firm believer that everything happens for a reason and that we usually don’t know why.  For instance, I was married for 7 years then got divorced.  Jason was married and had 2 kids.  He was divorced around the same time that I was.  We reconnected shortly after (2006) and here we are married for 6 years.  I wouldn’t change my past if it changed where I am right now.

Of course I wish I could go back for CF progression took over and I had 80% lung function and above and I could do much more.  I am frustrated with my body that it can’t do what I want it to.  Simple things like walking from one end of the house to the other brings on a coughing fit and sometimes a panic attack because I can’t catch my breath.  It is so scary to feel like you can’t get enough air in to fill your lungs as much as you need to.  At least enough to feel like you are breathing ok.  I’m not a fan of how fast my CF has progressed over the last 9-10 months.  It feels like one day we marked off hiking off my bucket list and the next I need oxygen to walk around and have a wheelchair for the really bad days.  I am glad I did that hike even though it was really hard but I wanted to prove to myself that I could do it.  Now I can’t even do the “hike” to the bathroom without gasping for air.

I am anxious and nervous about what Barnes Hospital will say next week during my transplant evaluation.  It is a scary time in my CF journey.  I know it is scary for me, so know that I know it is scary for you all who love and care for me.  We will have to make it through together.

With all of that said….CF is all I know.  Life with CF is all there is to me.  I don’t know what it’s like to NOT have CF.  I had no choice in the matter.  There are some aspects where I’m thankful I have CF because I wouldn’t have met some of my amazing friends if it weren’t for CF.  I don’t like all the bad stuff CF brings but I am one tough stubborn chick because of CF.

Until next time…

11 thoughts on “If I didn’t have CF

  1. I just want to start by saying you are absolutely AMAZING! ! This post made me bawl like a baby for many reasons, but most of all because of the burden you feel you are on others. News flash chicka, YOU ARE NOT NOR WILL EVER BE A BURDEN!!! My best most dearest friend died from CF in 2012, and I’m telling you now I would not be the person I am today without her being a part of my life for 30 years. You and others with CF make us “unsick” folks realize what’s important in life and to cherish the time we have with each other. I agree that everything happens for a reason, though we may not understand the reason, but it’s there. You Shannon, are a fighter and prove day after day what strong truly means. Those of us lucky enough to know you, or other CFers, don’t feel burdened but blessed. You are an inspiration to us all; to live life to the fullest and never take even the smallest tasks for granted. Keep your head up BEAUTIFUL, and please never EVER forget how special and fantastic you are!!!
    Much love ♡ Carly :))

  2. Shannon, take one step at a time. Be prepared for your visit to Barnes with snacks, water & extra O2. The eval is really like an endurance test, but you will meet wonderful folks. Lots of support with Transplant support group @ Barnes on Wed @11:30 am. Also, Second Wind Lung Transplant Group has great support. Plus mentors are available,too. Just ask. Also there is a CF group in St. Louis, so check that out if you have time. Your post is amazing & Concise & right to the point. Great that you can put in all into words! Keeping you in my thoughts & prayers, Jenni O.

  3. Shannon,

    I’m not sure if you knew or remember this, but you were my first kiss. Okay, so it was me kissing you on the cheek while we were on the back of a little Honda 50 dirt bike, but still, to me, that was my first kiss.

    You were my first childhood crush.

    You were the one who got Marty Mootz to sucker-punch me in the stomach at recess. Lol, thanks again for that. :-/

    You have been a great, close friend, a schoolmate and a teammate.

    You were always so MANY things. At the very end of that list, you were also a girl living with CF.

    I guess what I mean to say is, although you have battled this for a lifetime, it has never been, in my mind, what has defined you.

    Instead, you have been defined by your fun, zany personality, by your sometimes dry humor, by your never ending optimism and by your ability to see a light in the darkest of places.

    As you enter this next chapter in this book of your life, just know that for those of us who know you, you always have, and will always be, so much more than what you may feel.

    Travis

  4. I’ve “known” you for quite some time. Before I even met Patrick. I went to you for every little thing when I first started to talk to Pat because you eased my fears about what it’s like to be with someone who has CF. You are one of the strongest and most amazing person that I know. I just want you to know you are always on my mind, in my prayers and in my heart. I love you and I am so fortunate and blessed to have you in my life. I don’t think I would be where I am today if it weren’t for you. Love you girl, and even though we are miles apart, all my love and support are always here.

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