I Have CF SO WHAT?! (2025)

22/11/2022

On Substack today- celebrating my wrinkles! Trikafta has given me a new perspective on beauty. Link in bio!

17/08/2022

CHEERS 🥂 to an easy life. Over on substack I’m writing about the new perspective Trikafta has given me on ease vs difficulty. I’d love if you follow along on my new writing endeavor! https://laurenbweeks.substack.com Link in bio

05/08/2022

HAPPY CHEATING DEATH BDAY TO ME! 32 was always the life expectancy growing up from the time I realized cf might shorten my life. Today I’m celebrating with my 3 gray hairs, my proud wrinkles, and getting to experience life as a mama to this sweet boy, and of course with Trikafta that’s made it all possible.

03/05/2022

What if I told you, young Lauren,⁣⁣
with the crackles in your chest⁣⁣
and the vibration of your Vest ⁣⁣
and the hum of your neb⁣⁣
and the tears before bed, ⁣⁣
That it was all going to be ok. ⁣⁣
⁣⁣
What if I told you⁣⁣
all those choices, ⁣⁣
(you know the ones) ⁣⁣
(The ones where you wondered⁣⁣
If it was worth it to decide ⁣⁣
because you didn’t know⁣⁣
if you’d be alive) ⁣⁣
didn’t have to be so fraught,⁣⁣
so filled with ⁣⁣
uncertainty ⁣⁣
and wondering ⁣⁣
and questioning.⁣⁣
The future plans⁣⁣
didn’t have to be⁣⁣
wickless candles⁣⁣
melting, ⁣⁣
when all you wanted was a flicker⁣⁣
to light the way. ⁣⁣
⁣⁣
That degree you won’t use?⁣⁣
That career that’s just for now? ⁣⁣
That marriage without anniversaries?⁣⁣
That kid who loses their mom too soon?⁣⁣
That 401k for a retirement that never comes?⁣⁣
That house with a 30 year mortgage you never intend to pay off?⁣⁣
You’ll whisper to young Lauren,⁣⁣
“Thank you,” ⁣⁣
for striking the matchbox⁣⁣
with Hope. ⁣⁣
A blanket in the backseat⁣⁣
“Just in case.” ⁣⁣
⁣⁣
What if I told you⁣⁣
You’d get to. ⁣⁣
Get to breathe⁣⁣
(without wincing)⁣⁣
Get to laugh⁣⁣
(without coughing)⁣⁣
Get to love ⁣⁣
(both a husband and a baby) ⁣⁣
Get to live ⁣⁣
without limits ⁣⁣
and fear ⁣⁣
and inconvenience ⁣⁣
and fu***ng hospital beds. ⁣⁣
⁣⁣
What if I told you⁣⁣
miracles happen? ⁣⁣
And they’ll happen to you. ⁣⁣
⁣⁣
You’ll probably look around ⁣⁣
At the life you’re building anyway⁣⁣
smirk ⁣⁣
and nod your head, ⁣⁣
raise your eyebrows,⁣⁣
looking smug, ⁣⁣
wink
and say ⁣⁣
“Told ya!” ⁣
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16/11/2021

Dear Mom, ⁣
⁣
Why didn’t you tell me?⁣
That my heart would burst through my rib cage ⁣
When he took his first breath, cried that little squeaky cry. ⁣
That my face against his soft downy hair would make tears spring to my eyes in the best way. ⁣
⁣
Why didn’t you tell me?⁣
That one stare from his eyes into mine, ⁣
one squeeze of his little hand around my finger,⁣
one hiccup, one sigh, one tiny little milk drunk smile⁣
would leave me breathless. ⁣
⁣
Why didn’t you tell me? ⁣
That a whiff of his soft freshly bathed skin, ⁣
a kiss on his teeny tiny nose, ⁣
his warmth against my chest in the middle of the night,⁣
would turn me to mush. ⁣
⁣
Why didn’t you tell me? ⁣
That when he finally settled after my rocking and sshhhing and loving,⁣
when he latched onto my breast for the first time ⁣
when he lulled himself to sleep all by himself ⁣
That my pride might burst through my skin. ⁣
⁣
Why didn’t you tell me? ⁣
⁣
Oh but I was telling you all along. ⁣
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When I told you to slow down and rest, cause I didn’t want to see you sick or in pain. ⁣
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When I called too many times just to chat and hear your voice. ⁣
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When I hugged you a little too tight the day you left for college. ⁣
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When my eyes welled up seeing you marry the love of your life that day in August.⁣
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When I stayed up all night while you labored with my grandson, eager for my baby to meet her baby, who I would love just as much. ⁣
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Why didn’t you tell me? ⁣
That love could be this big, this real, this pure, this unbelievable, indescribable, unrelenting. ⁣
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Well, maybe I knew all along, Mama bear. After all, it takes a Mother’s love to learn how to love at all. ☂⁣
⁣
-Lauren B. Weeks⁣
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15/11/2021

Haven’t hopped on this account in a while but just had to announce my Trikafta baby’s arrival! I have never felt such immense love and gratitude for the gift of being alive and healthy enough to be a mom thanks to . Every day I’m in awe of getting to experience such love and such joy. The other day I sat crying, not because I was overwhelmed or tired (ok maybe a little tired) but because I couldn’t handle the emotions of how blessed I feel. I never ever imagined being here today, 31 years old, virtually no health issues to speak of, a future filled with raising my son without a concern I would have to leave him too soon, but here I am and life is so so sweet. 💜

11/05/2021

Having kids was never a given for me. I with the decision to bring a baby into this world when my life expectancy told me I might have to leave them behind. I worried about if my body would be healthy enough conceive or to carry a child. How would my body handle sleepless nights and germy toddlers? How would I balance taking care of myself and taking care of another human? ⁣
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Enter Trikafta. ⁣
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After a year on this drug, my lung function was back to 100%. Read: normal. I no longer needed daily treatments, and when I got sick with a cold or allergies, it didn’t land me in the hospital. I truly felt cured of cf. My future opened up wide and the decision to have kids became a lot more clear. All those barriers that existed my whole life were suddenly... gone. Suddenly I had all the same concerns a “healthy” person had when it came to deciding to have kids, and none of them were cf related. And after witnessing first hand the love my mom has for me, I knew in my heart I wanted to be a mother. ⁣
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I’m beyond excited to announce that Kyle and I are expecting a baby boy this October. Pregnancy has been a beautiful, scary, and miraculous experience for us. I have felt completely embraced by the love and support of family and friends. We are over the moon and can’t wait to meet our little guy! ⁣
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12/12/2020

The 10th and final part of my intuitive eating series is Honor Your Health with Gentle Nutrition ⁣⁣
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“Make food choices that honor your health and taste buds while making you feel good. Remember that you don’t have to eat perfectly to be healthy. You will not suddenly get a nutrient deficiency or become unhealthy, from one snack, one meal, or one day of eating. It’s what you eat consistently over time that matters. Progress, not perfection, is what counts.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch) ⁣⁣
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Growing up with cf, I never really learned what proper nutrition was. If it was high calorie and high fat, I ate it, in order the keep the pounds on. I remember during one dietician visit in the hospital, she asked me to list off what I eat in a day and I included chips, cookies, and hot dogs and got a thumbs up! ⁣⁣
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Once I started Trikafta, and especially since training for a marathon I had to re-learn what to eat in order to feel good and perform. I learned that I need to include an ample number of carbs with my meals in the form of mostly whole grains like brown rice and wheat bread, or sweet potatoes and potatoes. ⁣⁣
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I also have learned the importance of protein to keep me full and satisfied. Any meal I eat whether it’s Greek yogurt or eggs and chicken sausage in the morning, chicken or steak at lunch and dinner, I always make sure to include protein. ⁣
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I’ve learned the importance of fiber to keep me full. I add vegetables and fruits whenever I can and intuitive eating has taught me the importance of variety, so my fridge and freezer are stocked with a bunch of different foods. ⁣
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Together with the other principles, gentle nutrition guides my decisions of what to eat but it doesn’t dictate it. There are no rules about what is good and bad, so when I want to eat a burger for dinner, I do! I just recognize how foods make me feel and decide which will fill me up, keep me energized, and fuel my workouts. Most importantly, I think about which foods will taste the best to me in the moment! ⁣⁣
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I hope you’ve enjoyed my series and learned a little bit about what intuitive eating is! Reach out with questions as always! ⁣⁣
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10/12/2020

Part 9 of my intuitive eating series is on Principle 9- Movement Feel The Difference. ⁣⁣⁣
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“Forget militant exercise. Just get active and feel the difference. Shift your focus to how it feels to move your body, rather than the calorie-burning effect of exercise. If you focus on how you feel from working out, such as energized, it can make the difference between rolling out of bed for a brisk morning walk or hitting the snooze alarm.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch)⁣
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Once I started gaining weight on Trikafta, though, I started paying attention to how much I was burning during my workouts. I started doing workouts that were supposed to be “good” for weight loss like HIIT. And ya know what? I HATE burpees and I HATE not being able to breathe from working out too hard. ⁣⁣⁣
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Intuitive Eating has taught me the importance of finding exercise you enjoy. For me that is running! It is a chance for me to clear my head, breathe the fresh air, and it doubles as exercise for my dog Nugget! ⁣⁣⁣
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I’ve also learned how important strength training is. The average runner who doesn’t strength train loses 4.4 lbs of muscle mass a year from their untrained areas. This is not good as you age and need strong muscles and bones to support your body. Plus, I was recently diagnosed with osteopenia from years of not absorbing nutrients so I have to be extra intentional to improve my bone health. ⁣⁣⁣
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Now, I run 4 times a week for at least 3⁣⁣⁣
miles and I incorporate strength training at least 3 times a week. Sometimes I take a rest day or week when I need it. However, I pay attention to how exercise makes me feel and remind myself of those benefits BEYOND weight loss for motivation.⁣⁣
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I am so much more at peace now that I don’t do burpees and high intensity exercise. I truly enjoy my runs and my strength training sessions and I do it for my overall health, NOT to lose weight. This is another area that is so freeing thanks to intuitive eating!

09/12/2020

Part 8 of my intuitive eating series is Principle 8: Respect Your Body⁣
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“Accept your genetic blueprint. Just as a person with a shoe size of eight would not expect to realistically squeeze into a size six, it is equally futile (and uncomfortable) to have a similar expectation about body size. But mostly, respect your body so you can feel better about who you are. It’s hard to reject the diet mentality if you are unrealistic and overly critical of your body size or shape. All bodies deserve dignity.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch) ⁣
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After starting Trikafta, I started gaining weight pretty quickly. As someone who was always naturally small due to malnourishment, and who always had people lamenting “I wish I could eat whatever I wanted and still look like you,” this was a big adjustment. ⁣
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Intuitive Eating has taught me to respect where my body has found itself. We all have a genetic blueprint and mine was not meant to be as petite as I was. The only reason I was smaller was due to cf. Suddenly, my body was growing to the size it was always meant to be and that should be celebrated not despised. This body represents health thanks to Trikafta! ⁣
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Maybe the most meaningful thing I did as a result of this new body respect was to buy new clothes that fit and flattered my new size. I went up 2 jean sizes and got 3 new pairs that hugged my new curves. I sold my favorite leggings online and ordered the same pairs in a size up. I ordered sweaters and t shirts that didn’t accentuate my belly. I donated those XS clothes and didn’t look back! ⁣
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Now that I wear clothes that fit, I am no longer reminded of the size I used to be, which for the record, was “desirable” to many but for me it wasn’t necessarily a “healthy” size.⁣
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I wouldn’t say that I have come to fully love my body— but I have developed a more neutral relationship with it. I know now that I don’t need a flat stomach in order to be happy. I would much rather have the food health that Trikafta has afforded me! ⁣
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Check out the blog for more! http://thesowhatlife.com/2020/12/09/intuitive-eating-for-cystic-fibrosis-part-8-respect-your-body/ ⁣
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07/12/2020

The 7th part of my intuitive eating series is on emotional eating: cope with your emotions with kindness. ⁣
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“First, recognize that food restriction, both physically and mentally, can, in and of itself, trigger loss of control, which can feel like emotional eating. Find kind ways to comfort, nurture, distract, and resolve your issues. Anxiety, loneliness, boredom, and anger are emotions we all experience throughout life. Each has its own trigger, and each has its own appeasement. Food won’t fix any of these feelings. It may comfort for the short term, distract from the pain, or even numb you. But food won’t solve the problem. If anything, eating for an emotional hunger may only make you feel worse in the long run. You’ll ultimately have to deal with the source of the emotion.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch) ⁣
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Over the last year, I have really been working on my coping skills to address any anxiety or depression I may be feeling. Thankfully, I have found tools that work for me that don’t involve food such as meditation, running/walking, snuggling my dog, and talking to my husband or a therapist. ⁣
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But occasionally, after a bad day it is tempting to reach for food as a source of comfort. In high school, when I was having a bad day I would drive to Wendy’s and get a chocolate frosty and a medium fry to dip and cry into my food. I’ve definitely been guilty of eating a whole pint of Ben and Jerry’s ice cream after a break up. And when I’m bored, I often find myself perusing the cabinets for something to do. ⁣
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Intuitive eating has re-affirmed the coping mechanisms I have developed from working with a therapist and now I turn to food as a means to cope less and less. It helps that I honor my hunger so that if I’m bored but not hungry I don’t turn to food— I find something else to do like going on a walk and listening to my favorite podcast or reading a book. ⁣
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Before intuitive eating, I never thought about how I used food as a way to sooth my emotions, but together with the other principles, coping with my emotions in other ways allows me to have a much healthier relationship with what I eat and why I eat it. ⁣
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05/12/2020

The 6th principle in my intuitive eating series is Feel Your Fullness. ⁣
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“In order to honor your fullness, you need to trust that you will give yourself the foods that you desire. Listen for the body signals that tell you that you are no longer hungry. Observe the signs that show that you’re comfortably full. Pause in the middle of eating and ask yourself how the food tastes, and what your current hunger level is.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch) ⁣
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I have always eaten in a way that honors when I’m full. It isn’t uncommon to leave food on my plate when I’ve filled up my stomach and I ALWAYS have leftovers after a meal. So this principle has been easy for me! ⁣
Intuitive eating comes with a hunger/fullness scale that helps you gauge where you’re falling- where 1 is ravenously hungry 5 is neutral (neither hungry or full) and 10 is uncomfortably full. ⁣
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Using this scale has helped me get back in touch with where my fullness falls. Once I’m full, I stop eating before I get uncomfortable. ⁣
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One night I got a big delicious frappe (or a milkshake if you’re not from New England) from an ice cream place in town. I wasn’t very hungry and the frappe was HUGE delicious goodness. As I started drinking I realized pretty quickly that I was getting full. So instead of filling up on what was left of the frappe, I simply put it in my freezer to enjoy the next day. ⁣
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IE has taught me that it isn’t necessary to clean your plate especially if it’s going to make you uncomfortable to do so and if the food is no longer satisfying.⁣
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As I talked about in the “honor your hunger” part, I also now know that I need a mix of a fat, a protein, and a carb to fill me up. Plus fiber rich foods like vegetables and fruit help to keep me full! ⁣
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Feeling my fullness, together with the other principles, has definitely kept me from overeating especially as I’m getting back in touch with my hunger and fullness signals. ⁣
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Check out my blog for the full post http://thesowhatlife.com/2020/12/05/intuitive-eating-for-cystic-fibrosis-part-6-feel-your-fullness/ plus Intuitive Eating and the Intuitive Eating Workbook for more details about how to start your journey. ⁣
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04/12/2020

Part 5 of my intuitive eating series is about discovering the satisfaction factor. ⁣
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“The Japanese have the wisdom to keep pleasure as one of their goals of healthy living. In our compulsion to comply with diet culture, we often overlook one of the most basic gifts of existence—the pleasure and satisfaction that can be found in the eating experience. When you eat what you really want, in an environment that is inviting, the pleasure you derive will be a powerful force in helping you feel satisfied and content. By providing this experience for yourself, you will find that it takes just the right amount of food for you to decide you’ve had “enough.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch) ⁣
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I LOVE tasty food. I’ve always been someone who savors the taste of food and seeks out things I enjoy! I’m so afraid to get COVID not because of my lungs but because I can’t stand the thought of potentially losing my sense of taste! ⁣
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But when you’re trying to lose weight, eating becomes about limiting calories rather than eating what tastes good.
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Often times, when I asked myself what I wanted for dinner, the options were limited to low calorie dinners. Some of these meals WERE satisfying, don’t get me wrong, but sometimes what would really satisfy me was a creamy pasta or a slice of pizza! ⁣
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Now that I’ve discovered intuitive eating, I pay much more attention to what I’m in the mood for and what will taste good. We have started ordering Hello Fresh to discover new recipes, to add variety to our meals, and to discover new tastes. This week we are having Pineapple chicken tacos 🤤, Creamy dill chicken 🤤, and Mandarin Chicken salads🤤. Each night I pull out the recipe cards and see which one make me drool the most and choose to make that one!⁣
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Last night, when I pulled out the cards I couldn’t stop thinking about the new gourmet pizza place in town. So we got that instead, because I knew that’s what would satisfy me! ⁣
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Paying attention to what tastes good makes life so much more enjoyable. Being able to savor the flavor is so much more fun than being hungry and miserable! Check out my blog for more http://thesowhatlife.com/category/intuitive-eating/

03/12/2020

Part 4 of my intuitive eating series is about challenging the food police!⁣
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“Scream a loud no to thoughts in your head that declare you’re “good” for eating minimal calories or “bad” because you ate a piece of chocolate cake. The food police monitor the unreasonable rules that diet culture has created. The police station is housed deep in your psyche, and its loudspeaker shouts negative barbs, hopeless phrases, and guilt-provoking indictments. Chasing the food police away is a critical step in returning to Intuitive Eating.”⁣
(From Intuitive Eating by Evelyn Tribole and Elyse Resch) ⁣
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Perhaps one of the biggest food rules I had was around sugar. I drank my tea black on the morning for fear of having too much sugar. When I was trying to lose weight, cutting out sweets was the first thing I did. And what do you think I craved as a result? BINGO, sweets! ⁣
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I remember one time I decided to make “healthy” brownies that contained AVOCADOS, almond flour, and minimal sugar only in the form of maple syrup. Needless to say, they were disgusting and I probably would have been much more satisfied with a few bites of a traditional brownie. The food police made me think the avocado brownies were “good” and traditional brownies were “bad.” ⁣
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In challenging the food police, I’ve developed an inner dialogue that allows me to notice when dieting rules might be creeping into what I choose to eat. That isn’t to say I ignore nutrition, but I understand when I’m making choices solely based on calorie count or diet culture rules.⁣
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Now, I don’t demonize sugar. I add a couple teaspoons of honey to my tea in the morning and you can bet I don’t eat any gross avocado brownies. I know that I feel sluggish if I eat a sugary donut for breakfast, but I don’t skip it because the food police tells me to— I skip it because of how it makes me feel!⁣
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THIS feeling from food governs my decisions of what to eat-- NOT the food police, food rules, or whether the food will cause weight gain. That’s what intuitive eating is all about, and it is so so SO freeing! ⁣Check out the blog for more! http://thesowhatlife.com/category/intuitive-eating/
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02/12/2020

Time for the 3rd principle of intuitive eating: Make Peace With Food. ⁣
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“Call a truce; stop the food fight! Give yourself unconditional permission to eat. If you tell yourself that you can’t or shouldn’t have a particular food, it can lead to intense feelings of deprivation that build into uncontrollable cravings and, often, bingeing. When you finally “give in” to your forbidden foods, eating will be experienced with such intensity it usually results in Last Supper overeating and overwhelming guilt.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch) ⁣
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Before Trikafta, I truly had made peace with food. I ate whatever I wanted when I was hungry for it, and I didn’t restrict on purpose, the only restriction came from a lack of appetite.
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Once I started Trikafta, I continued to eat like this only this time I started gaining weight because of it. This eroded the trust I thought I had around food, and I began to restrict. Each new attempt at losing weight came with new forbidden foods, and most of these came from the fact that they had too many calories. If I did allow myself to eat them, I measured out small portion sizes as to not go over my calorie allotment, and I was overcome with guilt. If I wanted more, I made sure to only eat them when I had a long run coming up to burn it off. Eating became conditional. ⁣
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So when I DID allow myself to eat these foods I went wild, because I thought I’d never get to eat them again.
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When I started intuitive eating, I bought a whole bag of Ghiradelli chocolates as my first “fear food” to have in the house. I gave myself permission to eat it without counting calories. Now that it’s not forbidden, I no longer feel the need to binge on it. It’s now a daily ritual to eat just one piece of chocolate a day. If I want more, I know I can have it and sometimes I do without guilt! But the allure has worn off.⁣
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Making Peace with Food has allowed me to enjoy eating again! Where I initially thought I couldn’t be trusted, I have been pleasantly surprised how learning this principle has put me back in control of my eating and how little I feel I NEED foods that were once forbidden. Check out the blog for more! http://thesowhatlife.com/2020/12/02/intuitive-eating-for-cystic-fibrosis-part-3-make-peace-with-food/

01/12/2020

Today’s post is on the second principle of intuitive eating: Honor Your Hunger. ⁣
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“Keep your body biologically fed with adequate energy and carbohydrates. Otherwise you can trigger a primal drive to overeat. Once you reach the moment of excessive hunger, all intentions of moderate, conscious eating are fleeting and irrelevant. Learning to honor this first biological signal sets the stage for rebuilding trust in yourself and in food.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch)⁣
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After starting Trikafta I had a hunger that I hadn’t experienced before. I often didn’t have an appetite due to my cf before, and after Trikafta I suddenly I wanted to eat everything in sight. This was made worse by the restriction I was putting myself through trying to lose weight. ⁣
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That often meant that by the afternoon I was so ravenous that I would eat anything I could. I couldn’t be trusted around bags of chips or candy- I would eat the whole thing! ⁣
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With intuitive eating, I’ve learned to eat when I’m hungry. This means I’ll have a protein shake and a big breakfast after my morning runs and I often have a 4th meal between lunch and dinner. And I’ve learned what I need in my food to satisfy my hunger: a mix of protein, carbs, and fat, and some fruits and vegetables to fill me up! My meals are more balanced now that I pay attention to my hunger. ⁣And I no longer binge like I used to!
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This girl hates to be hungry and I have so much peace now that I’m fueling my body with nutritious and fun food when I need it! Check out my blog for more details into how I incorporated this principle. http://thesowhatlife.com/category/intuitive-eating/

And check out Intuitive Eating for even more good details! ⁣
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30/11/2020

Since sharing my CFF blog on my journey to finding acceptance with my Trikafta weight gain, I’ve had quite a few people reach out to me with questions about intuitive eating. ⠀
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I only have good things to say about my experience so for the next 10 days I am going to go through each of the 10 principles and share how I’ve implemented them in my life! I hope my story inspires you to learn more about it, or at the very least answers some of your questions. Full blog post here http://thesowhatlife.com/2020/11/30/intuitive-eating-for-cystic-fibrosis-101-reject-the-diet-mentality/
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Principle 1: Reject the Diet Mentality “Throw out the diet books and magazine articles that offer you the false hope of losing weight quickly, easily, and permanently. Get angry at diet culture that promotes weight loss and the lies that have led you to feel as if you were a failure every time a new diet stopped working and you gained back all of the weight. If you allow even one small hope to linger that a new and better diet or food plan might be lurking around the corner, it will prevent you from being free to rediscover Intuitive Eating.” (From Intuitive Eating by Evelyn Tribole and Elyse Resch)⠀
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The biggest lesson I’ve learned by reading Intuitive Eating is that 95% of diets fail and result in you gaining back the weight or gaining more! ⠀
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Rejecting the diet mentality for me has meant accepting the fact that they simply don’t work, and it’s not worth it when they leave you feeling miserable. I’m lucky I came to this realization before I invested additional time in trying to lose weight, this girl HATES being hungry and LOVES her ice cream and chocolate. ⠀
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I deleted my calorie trackers, recycled food measuring containers, and unfollowed anyone on Instagram or TikTok that talks about weight loss. It has been so freeing to eat what I want and I no longer find myself bingeing on entire bags of chips because my body isn’t in a constant state of deprivation! ⠀
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If this sounds awesome to you, I encourage you to read Intuitive Eating for a how to guide! Click here http://thesowhatlife.com/2020/11/30/intuitive-eating-for-cystic-fibrosis-101-reject-the-diet-mentality/ for the full blog including my journey to ditching diets forever!
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I Have CF SO WHAT?!