A Humble Retreat | Fatal Flaws in My Rebellion Against Cystic Fibrosis Treatment

 

Today I’ll be sharing a little ramble from the mind of a chronically ill girl just trying to be a good person on the search for inner peace.

It really is a peak inside my thought process and a lot of the thoughts here are still unraveling, so I hope somewhere in here you find something that helps you. I hope somewhere in here you disagree with me and find your own truth. As always, take what you need and leave the rest.

If you’re new here, I’d like to preface this by saying hello and welcome! I want you to know I’ve been a super healthy CFer for most of my life, and that’s not really because I’m a Cystic Fibrosis fighter or a super hero or anything. Honestly, I mostly got lucky. I rebelled against the standard western approach to CF, refusing meds and being non-compliant at every opportunity.

Don’t get me wrong- I take pride in living a mindful and healthy lifestyle.

I generally take good care of my body. I aim to eat a balanced diet with lots of fruit and veggies, I generally avoid processed junk and dairy, I protect my sleep schedule like nobody’s business! I work out and do yoga and try to spend as much time as I can outdoors- especially out of the city. But that’s pretty standard, right? As far as my CF life goes… I’ve been really lucky.

Confession: Over the course of my entire life thus far, I’ve only done my treatments consistently and taken all of my meds probably a couple of weeks total! When I’m sick or starting to get sick or in an environment where I know I’ll be exposed to lots of germs, I step it up and do more treatments, take my meds, wash my hands more, etc. When my lung function is down, I step it up for a week or two. But for the most part, I strut around this world like I don’t even know CF- and it’s finally catching up to me.

I’m 23 now and all that non-compliant rebelliousness is a little harder to get away with these days…

I cough a little bit now. Not constantly, but enough to be noticeable to the people around me. I feel more tired than usual lately, especially since a recent dip in my health after a year of living in a bad (and dirty!) roommate situation.

Suddenly, I can feel the fur from 4 pets in the air of my apartment no matter how much I dust or vacuum. Fur on the bed bothers me now, because I really can’t breathe as well. I’m super tired a lot of the time, and sometimes my lungs just feel tense and worn out- especially if I haven’t done a treatment in a week. (No shit Sherlock, right? I know, I know. This is a humble post, okay. Embracing it.)

I used to be able to just buckle down and go for a run to feel better… Now I think a run would probably land me on the ground in frustrated I-can’t-breathe tears.

I turned to herbalism for a more holistic approach to caring for my body and working with CF instead of fighting it… Which is still very much my philosophy.

The battle of chasing down symptoms and trying to get ahead of them is exhausting, it’s much more practical to work with my body. Working with my body to accommodate my own needs mindfully is a relief, especially in contrast to going to war against CF, which instead forces me to really feel the weight of an endless uphill battle where I slowly lose the ability to live life as I know it. I believe my death will be a slow suffocation- like over the course of a decade, and that’s terrifying to me. I try not to think about it… but the more tired I get, the more the thought weighs on me. Some days my lungs feel tense and I don’t think “oh, I should keep up on my treatments,” instead I think, “is this the beginning? Is this the time it starts and just never lets up again? The beginning of the end?”

Thank you for those morbid thoughts, dear brain.
But thankfully I’m able to remind myself that no, that’s not “fact.”
It’s just a fear.

In fact, at my last clinic visit my docs shared some new statistics with me, and let me know that the oldest patient they have currently is well into his 70s! Given my relatively strong health for someone with Cystic Fibrosis, it’s kinda silly to be thinking about my slow suffocation at just 23 years old. As long as I take care of myself, I probably have a long, long time to go.

So with these reminders in place, I want to share a little bit about my humble retreat from the non-compliant rebellion I’ve been playing out for years.

I’m returning to medications I swore off years ago. Some of them I swore off for a reason, like the inhaler that made me insanely jittery. I could breathe fine without it, and it wasn’t worth how dizzy and disconnected it made me feel. I wanted to feel grounded and whole… so I didn’t take that medication unless I absolutely had to- like if I caught a lung infection and wound up in the hospital.

Today? I need that inhaler or I can’t breathe well, and I need it to open up my lungs to be able to receive other important medications as well… so I’ve learned techniques to manage the jitters and feel grounded and whole despite the medication’s side effects. It’s not a battle, it’s a team effort. My brain and my body working together to create the wholesome life I want. There’s a spiritual aspect of it too, and I hope to be able to share more of that in the future.

Some of the medications, I stopped taking because I just didn’t think I really needed them. Little saviors like the hypertonic saline nebulizer- it creates salty air, basically, and when inhaled, it helps to dry up and clean out the mucus in the lungs. From what I understand, it helps to prevent infection and it also helps me be able to cough out any excess mucus and keep my lungs clean and clear. It’s prevenatitive (which makes it really dumb to skip, note to my past self). The saline is actually one of my favorite CF medications, I love that it’s just salt water and it has such an impact.

Other medications felt like crutches, and I wanted to be strong. I was a fighter, I didn’t need the crutch. (Hint: NOT TRUE!) The pancreatic enzymes I take that help me digest my food are one of these “crutches” I resisted in the past. I don’t get an upset stomach when I skip these pills if I just don’t consume animal products or processed junk foods… so I decided I didn’t need these pills, I’d just be responsible and eat a sustainable whole food diet.

I started taking digestive bitters, an herbal remedy that helps improve digestion, with my meals and figured my body knew what it was doing. The problem with this strategy? Bodies with cystic fibrosis have a difficult time absorbing fat soluble vitamins (A, D, E, and K), and with major sources of these vitamins being gone from my diet AND not taking enzymes to help, my body was basically being starved of the nutrients it needed no matter how many vegetables and so-called superfoods I ate.

My rebellion is taking a peaceful turn…
And it doesn’t make me weak.

I’ve shared about my love for herbalism in the past, and even went into detail about how some of my stubbornness landed me in trouble in the past… but last time it was an acute incident. This time? It feels more long-term. This turn isn’t just a one-time allowance of turning to medication for support…

I’m realizing the medications are not the enemy of the mindful lifestyle I want to live.

They’re all tools to support me in living a full and happy life. It’s not a war against western medicine… The only war I need to fight is the one that allows me to love myself fully every single day. Not just in the form of bath bombs and vacay planning. I need to love myself enough to try new things, to open up to solutions, to give the medications and the mindful methods the opportunity to help me… because I’m not going to survive this mess of a disease all by my stubborn little self through sheer determination. (Okay, I mean I wanna say I could… but it would probably suck more. It’d be exhausting and involve a lot of pain and frustration.)

I’m rebelling against the need to rebel, I suppose.

I’m embracing the easier route more openly by taking the damn pills and doing the treatments. And not bashing myself for it or taking it like a chip on my shoulder. I’m realizing that I can still run, do yoga, be vegan, and enjoy herbalism- I’m still able to live a conscious and mindful lifestyle while taking the medication I need in order to live a full life. I just need to find my balance and remember that black-and-white judgments are rarely any use to anyone.

When I put myself in a box like that of saying “this is always good” and “this is always bad” and define myself based on those judgments… it’s just not a very good way to live. It’s not a healthy way to live. In fact, it hurts. It’s painful and confusing, a constant feeling of push and pull when the reality is somewhere in the middle and it’s actually okay.

I never gave myself enough credit in the past for what a burden life with a chronic illness truly is to carry. Today I’m taking a moment to acknowledge the weight of the battle I’ve been fighting… and I’m giving myself permission to set down the weapons and shields and just… let myself BE. Just take care of myself, without declaring weakness or surrender or pushing myself to be stronger. I’m realizing I don’t think less of anyone else for taking their medication, for resting when they need to, for turning to a blend of holistic and pharmaceutical tools and strategies to help them live their best lives… so why am I being so hard on myself?

We judge ourselves more harshly than anyone else ever will.

With chronic illness and mental illness, I think this is especially true. Today, I’m taking a moment to acknowledge my struggles with both and to say 1) thank you to those who have supported me and encouraged me! To those who have shared their journey with me and also stepped up to take charge of their own lives, inspiring me to do the same.

And 2) thank you to myself, and I’m so sorry for the ways I’ve made it harder over the years. The rebellion ends here.

If you’ve related to this ramble, I want to challenge you to take a moment and say what needs to be said to yourself. It’s not easy, but it’s important. What do you need to hear from yourself? What have you been doing to (or not doing for) yourself? What is it time to change? What do you need?

 
Jessica Pena4 Comments