A Look into the Thoughts of a CF’er

Really embracing this disease is a lot harder than I thought it would be.

Not that I thought it’d be easy.

There’s such a fine line between managing cystic fibrosis (and all that it brings) and letting it take over.

That line seems thinner every day.

And then there’s the loneliness. All the thoughts and fears that interrupt my day… no one else quite understands what they’re all about.

I can’t go to a support group and vent how scared I’ve been the past week or monthΒ because there isn’t one.

And most online sites I find deal largely with the actual sickness. The hospitalizations, medications, etc.

But what about the emotional side? Or the financial side? And the emotions that come with THAT?

Sometimes I feel frozen.

There are things I want to do, figure out, try… but then the fears, what ifs, and questions stop me.

How will having cystic fibrosis affect XYZ? Or how will XYZ affect my CF?

And I get MAD. Really mad.

Because as much as I truly believe the cliche that “everything happens for a reason,” it’s so unfair sometimes.

Instead of taking a vacation with Mike, visiting friends in another state… I have to save for the mountain of medical bills and prescriptions that come in every month.

That’s what’s been weighing most heavily on my mind recently. The financial aspect. Having CF isn’t cheap.

I’d love it if any “extra” income could go toward something fun. Sun, sand, quality time with family…

Money is such a taboo topic. One I wasn’t sure I should bring up. But it’s a big part of what having a chronic illness is all about. The expense of it.

I always feel compelled to end conversations like this with an “it’s okay though” or “I’ll figure it out.”

But I’m not going to do that here. Because I want to be honest about how I’m feeling, and right now? Not feeling like “it’s okay.”

If I can’t be honest here, there’s nowhere else I can be.

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29 thoughts on “A Look into the Thoughts of a CF’er

    • Thank you! You’re too sweet. And I appreciate you being there for me – it means more than you know πŸ™‚

      Besides, you’re pretty awesome yourself.

  1. It’s so good to open up about ALL of the aspects of CF. I think people often forget the expense that comes with diseases, illnesses, etc. I have plain old asthma and allergies – and those medications alone impact us financially. I can only imagine what costs you must incur. And no – it’s not fair!

    • You’re so right – I just have a hard time opening up because the last thing I want my blog to turn into is a pity party. But I think as long as I don’t look at it that way, it won’t be. Showing everyone all sides of the disease – besides just the physical symptoms – is so important. Thank you for reminding me of that!

  2. Hi, you don’t really know me, but a friend emailed me your blog a few months ago, and I subscribed via google reader. I feel so compelled to post – I don’t have CF but I also have a chronic illness and seriously, sometimes it just SUCKS.

    I just wanted to respond and tell you how much your post spoke to me and how I got a huge smile on my face knowing someone else was dealing with the same frustrations. Not that I’m happy you’re frustrated, but just, well…these emtotions are so human and it’s nice to see other people being human.

    I used to look forward to your blog posts, and I hope by the past 3 it means you’ll be posting again! Whether you realize it or not, you are such an inspiration, even if it’s to a girl you never met in Fort Lauderdale πŸ™‚

  3. I just wanted to say I know exactly how you feel, which is part of the reason I am not as compliant as I should be. I feel like while I’m healthy I should live as normally as I can. I fear this will bite me in the ass some day! The financial part is terrible I hate not knowing what I’m in for. Its terrible to want to find someone to spend the rest of my life with who can financially support me because I won’t always be able to do it. Anyway sorry to vent. Just know there’s someone out there going through it too. ❀ august

  4. I’m disappointed that there isn’t a support group for you, but I really hope that the blog helps out as a decent substitute. I genuinely hope that you feel better soon, but don’t beat yourself up for venting and feeling the bad feelings, too! xoxo

    • I know, the no support group part really sucks – definitely adds to the difficulty of the disease. The reason there aren’t any is because CF patients can be around each other. We carry bacteria only transmittable to each other, so it can be very dangerous to our health. A definite downside, for sure. Thank you for the well wishes! πŸ™‚

  5. We can be your support group! Thanks for making me understand that life is not always easy for everyone and still you smile on. Lets hangout soon!

    • Thank you! If my readers volunteer to be my support group, I won’t pass it up πŸ˜‰ And yes, we need another blogger lunch or something!

  6. Oh, Kat, I am so sorry you have to go through this. It really is not fair. I am glad you have an outlet now — we are here for you in every way that we can be.
    I have a chronic illness, but most days I can live with it. My medications are few, and I am lucky enough to have insurance to cover it. I can only imagine the struggles you face daily, and am so impressed and proud of you with how you handle everything.
    You are an amazing woman, and I am glad to know you.
    Hang in there and keep being strong!

  7. Katharine – I certainly do not think you let CF control you – no matter how stressful it may be sometimes. You have a full and active life (and you finished a 5K!) – sometimes the balancing just gets tricky – I don’t know how I would do what you do. You certainly are a much stronger person than I am.

    Just remember – you and Mike can have just as much fun snuggled up at home as you can globetrotting. Its the small things that matter most.

    So… since I’m so confident in you… want to run a 1/2 marathon in November??? I bet you could do it…

  8. I will write a better response tomorrow, as I am currenlty 1/2 asleep, but even though we’re just computer zombies out here in internet land, we can be your support group, and you CAN always feel how you feel around us. You don’t need to pretend to be okay when today, you are not. CF can suck. Today, it is sucking the happy out of you. Tomorrow, perhaps, it will not. But if it does, we will wait with you, and we will read and listen from you, and we will be there for you- when you are feeling better, or not.
    xxoo,
    Beth

  9. {{{hugs}}}

    I don’t really have anything useful to say, except that I’m sorry that you have to go through this. And that I hope that everything works out for you.

  10. Hi –

    I just found your blog through CG’s post. I am a cyster who made my career in social work. I have spent years planning and running support groups for people with cancer. I have ALWAYS felt cheated out of the group experience. I have to say, though, I recently started skyping with some CFer’s that I found online and it feels like we’re sitting right across from one another chatting. It’s really helped, because I, too, have had a crappy time trying to cope with CF lately. I also feel like I have to spare everyone my feelings. I just started laying it all out there in my blog and still sometimes feel like people just think I’m complaining…but I don’t care. It helps.

    Take it easy!
    Stacey
    http://www.confessionscyster.blogspot.com

  11. Like Jessica, I don’t feel like there’s anything I can do besides offer support. CF sounds scary and frustrating. Feel free to vent as much as you want. it’s better to get your feelings out.

  12. CF does suck sometimes and add on top of that the mounting medical bills and it can suck big time. When you add emotional stress onto physical stress it can just seem to overwhelm you. I know you don’t know me from a drink coaster, but if you ever wanted to chat it up with a 30 year old CFer please let me know. Also, you may have already tried CysticLife.org, and found it wasn’t for you, but I know I’ve seen people talk about the emotional and financial side of CF. Hope to see you over there πŸ™‚

    Ronnie

  13. I can’t say I know exactly how you feel, but there is someone very important in my life who also has a condition that gets in the way of life quite a bit. My boyfriend was diagnosed with chronic migraines and epilepsy a few years ago and despite a myriad of treatment trials and lots of money spent on medications, he is still pushing through. He isn’t always happy, because things are hard, just like for you. It’s not easy to pretend that you’re happy when simply you just aren’t. But he tries his best to focus on the positive things he has, even if he can’t always have the money to go on vacation and has to watch many people around him move forward with their lives while he spends time recovering.
    I guess what I’m trying to say is, know that there are those who support and love you. Always, always try to stay as positive as you can, and that mindset will help you handle things better.
    Best wishes to you girl ❀ x x

    • Thank you SO much for such kind words. I’m so sorry to hear about your boyfriend – it’s nice to know that someone gets where I’m coming from. Hope you’re doing well. πŸ™‚

  14. Hi, Just found your site. I understand your frustrations. I was diagnosed late – at 24! You should see if your state has a funding program for CF. Maybe your dr is aware. But I can tell you from experience – FIGHT FIGHT FIGHT the insurance companies. They will always deny deny deny. You can also try an see if your insurance company can assign you a case manager to help you.

    Hope this helps!

  15. i can’t even imagine what you’re going through, but just know that it’s OK to not be OK. sometimes you need that time to vent and express frustration so that you can get it out and move forward. you are in my prayers and i hope you have a wonderful day!

    • Thank you! It helps to have my readers let me know it’s okay. Sometimes you guys seem to understand more than people in “real” life. πŸ™‚

  16. I just wanted to let you know that I’m touched by the beautiful and expressive way you write about such hard issues. Hang in there. You’re a strong and amazing person, but don’t be afraid to let the frustration out, too.

  17. I can relate the the emotions. the bills are not as big a factor as im covered under my hubbies insurance. feel free to email me for any type of questions/support. im 42 with cf, diagnosed at 24. my story is on my wordpress site.

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