Taking One Day At a Time

(Disclaimer: I have a million different thoughts running through me right now, so I apologize if this is a little disjointed.)

My appointment at Hopkins yesterday wasn’t good. But it wasn’t bad, either.

My lung function dropped about 3% – from 67% back in October, to its current level of 64%. My best range has been in the 70s, so my doctor is a little concerned that it hasn’t been going up. I will say, and I admited this to him, that a lot of it is probably my fault. I’ve slacked on my treatments, in a big way, and for a long time. That adds up. But like I said before, I’ve been doing well keeping up with them for close to two weeks now.

Unfortunately those two weeks haven’t had much of an effect. Yet. That’s what I keep reminding myself, yet. If I keep up with this, and get back into an exercise routine, my lung function will (hopefully) go up.

To help with that, my doctor has put me on a round of Bactrim and added a new nebulizer medication to my regimen. (To read more about that, visit the “About My CF” page.) 

I left Hopkins even more overwhelmed than usual. This visit hit me much harder.

This is the best way to describe it: It feels like someone has died. Like I’m in mourning. I feel like I’ve lost who I thought I was going to be and have to surrender it to this disease. I don’t want to let CF control me; I badly want to be the person that puts on a smile and faces all that has to be done with grace and strength. I feel anything but strong.

Being diagnosed at 16 made it easy to shove CF to the back of my mind. I had boys and dances and college applications to worry about. I did my medicine because my parents and doctors told me to, but I didn’t let the meaning of it all sink in.

Then I went to college. I didn’t have parents to remind me of my meds. And there were boys and parties and classes. And FREEDOM.

So here I am, almost ten years later, still grappling with what having cystic fibrosis means. And it’s HARD. And SCARY. And completely overwhelming.

I’m sad and angry and hopeful and ashamed and fearful and tired.

I’m full of questions. (What will happen in five years? Ten? Twenty? Will I live to see my 40th birthday? Will I have kids? Will I have to get a lung transplant? Will I be able to accomplish all the things I want to do with my life?)

It never ends.

And that’s the thought that makes me want to give up. Because I have to deal with this every day, for the rest of my life.

So I remind myself to take one day at a time. To get through RIGHT NOW.

And hopefully, before it’s too late, a cure will be found. 

But until then I’m going to do my treatments, drag myself to the gym, try to get enough sleep, eat healthy, thank the people that support me, and just make it through another day.

Because my life is pretty damn wonderful, despite CF. And I want to stick around to enjoy it.

Advertisements

28 thoughts on “Taking One Day At a Time

  1. Katharine,

    I’m so proud of you for starting this blog up again and using it to tell others suffering from CF and those not, what it is like for you on a day-to-day basis! It is a really brave thing to do! Keep thinking positive and good things will happen!

    Love you!
    Austin

  2. I’m so sorry to hear that the appt didn’t go well. Your comment, “I feel like I’ve lost who I thought I was going to be and have to surrender it to this disease” resonates with me. I understand how easy it is to slack on treatments, to see daily treatments as a surrender rather than the necessary management of a condition. And I understand first-hand how frustrating and heartbreaking it is to realize that there are certain limitations placed on you over which you have no control. It’s only human to want to ignore it and move on. Don’t feel guilty. You’ll find your balance.

  3. Just remember nothing happens overnight, and big changes don’t happen in 2 weeks. The little things will add up eventually and I bet the next visit will be better. LOVE YOU! xoxo Kris
    PS- You staying on top of things has made me stay on top of them too 🙂

  4. You don’t have to surrender to anything you choose not to surrender to. Ashley is adamant in saying that the reason she’s lived as long as she has (she was diagnosed at 2 years old) is that she refused to feel like she was sick. She refused to let people treat her like she was.

    Do your regimen. Keep up with meds and exercise. But don’t do it because you might get sick if you don’t; do it because you’re choosing to be well.

    Keep your head up and keep talking about it. We’re here to help.

  5. 😦 I’m sorry you had a bad appointment. But try to keep your spirits up. Do something nice for yourself and try to focus on the positive.

    Can you set reminders on your phone? I have one that goes off every morning to remind me to take my medication. My boyfriend yells, “Take meds!” as soon as the alarm goes off.

  6. I agree with a previous post – it probably won’t change overnight. And I have to think that it probably has improved since you’ve been back to doing your treatments regularly. I hope this just gives you more motivation to continue with the positive change, so that you can see an improvement at the doctor’s next time!

  7. My health issues are nothing like yours, but I do understand feeling like giving up and like it will never be better. I throw shoes and repeatedly cry, “It’s not fair!” Not the best way to deal, but sometimes you just have to give in for a minute.

    I’m always down the street 🙂 or a phone call away.

  8. I am so sorry to hear this, you can do this! You are the most important thing in the world to yourself. Good job on sticking through the 2 weeks- results will show.
    I know I can’t relate as a reader but my thoughts are with you- I hope you can find strength from sharing your story.

    Sending positive thoughts your way!

  9. Sorry it didn’t go as well as you were hoping. Keep sticking with your treatments- I’m sure it will show!! I’m hoping for a cure too!! My best friend is a chemist at a pharmaceutical company and her sole project is to find a cure. I’ll go give her a kick in the butt to get working harder 😉

  10. I’m sorry that you’re having a hard time and even more sorry that this is something that you need to go through at all. All I can say is to trust your doctors and try to find a support system that really works for you, be it counseling, groups, or even blogging. If you ever need to talk, I am here. I know we haven’t “known” each other (how do you phrase that in the blogosphere?) for too long, but please know that! I hope that tomorrow is a beautiful day for you 🙂

  11. I can understand why you feel the way you do. But I completely agree with what you’re saying about taking things one day at a time. It’s not healthy to look into the future and ask yourself things like “Am I going to live to see my 40th birthday?” because you can’t do anything about the future. You can only control today. So take your medication consistently and don’t slack off with it. Or all of us here are going to cyber kick your ass haha. But in all seriousness, YOU WILL BE OKAY. I can promise that to you. You have a lot of people in your life that love you, and you have a lot of people on here that support you and what you’re doing. Your courage and strength are admirable and your emotions genuine, all of these are qualities that will continue to draw people to you to help you fight your fight. Tomorrow (or today, seeing it’s 2 in the morning almost) is going to be a new day, and a fresh start. This is your opportunity to take a stand. And I’ll be checking in every step of the way. Best wishes.

    ~Joe

  12. Sorry to read about your disappointing visit… but like some of the previous comments mentioned, I hope this motivates you to keep up with your treatments! 🙂

  13. PS to my previous comment—I can’t imagine how hard it must be to face what you’re going through, and I know it takes strength and courage beyond what I could know. I’m praying for you!

  14. Katharine, I just found your blog today. I read this post (and then your back story) and I can’t help but comment…. You may not feel strong right now, but you are. Otherwise you wouldn’t have made it through all you have already conquered. I can’t imagine how scary all of this is. You wouldn’t be human if you weren’t scared or playing with all of the what ifs. But after you let yourself fall apart a little bit, remember how fast medicine is moving. By the time you are 40, who knows what doctors will be doing to treat your condition. Take care of yourself as best you can in the meantime, and hopefully newer and better treatments are right around the corner.

    You have a new reader in me. My thoughts and prayers are with you 🙂

  15. You commented on my blog the other day, but I didn’t know you had your own until I saw it on Healthy Tipping Point! Glad I found you!

    I’m sorry to hear about your struggles. Know that your knew blogger friend and fan is praying for you! You are such an inspiration!!

  16. Girl, I think you have a 100% better change than anyone of surviving – your attitude is AMAZING. I have a friend and neice who have CF and we do the walk here every year in Pittsburgh…they will be a cure!! Keep your head up!

  17. i just found your blog when i was reading healthy tipping point. caitlin decided to send you the blogging pants which linked me to yours. I am so sorry for all of your troubles right now but always remember to look into the future, even if you dont know how long you will be here or how much you will accomplish. the future gives you the hope to strive to meet the goals, and each goal you make is one more thing to make you that much happier! enjoy yourself. love life. the CF is a part of you, not all of you.

    I also have to tell you that i went to highschool with a girl that had CF. she was on my cheerleadig team, then had to quit because she was getting a lung transplant. she is now 25. happy as a clam. living live to the fullest.

    i know that not much can help you right now, but i hope this brings you some form of comfort. hang in there. just remember there is never a bad day, just one that is different from the rest.

  18. You are my amazing daughter who is an inspiration to me! Your being born was NOT an accident, and you are here to do exactly what you are doing. CF, as someone said, is only part of you…and in order to really love yourself, you have to love ALL of you…that includes the CF! I love you, and I love that CF is part of what makes you the unique and special gift to me and to the rest of the world that you are!

  19. Stumbled over here from Healthy Tipping Point – congrats on being awarded the blogging pants!

    I second the idea of setting reminders on your phone. Perhaps the auditory reminder will help?

    You have SUCH a positive outlook on everything & I can’t wait to continue to read your blog! Happy Friday!

  20. I am so sorry it didn’t go well. I am sure, though, that these results will help you remind you to do what you need to in order to improve your health and lung function.

    Sharing all of this with the world is such an amazing way to hold yourself accountable because now we are in this with you, and want you to be WELL!

  21. You are a strong girl and I think you are moving in the right direction. Please don’t be disheartened. The little changes that you make in your life today, will add up to something substantial in the future. Just do the good things you are doing and it will all go well!

    Again don’t lose hope!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s