#catchingourbreath Instagram Photos & Videos

catchingourbreath - 550 posts

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    Mouth breathing after a hard play sesh. Watching the people make food hoping they drop some.

#twinning #hungry

    Mouth breathing after a hard play sesh. Watching the people make food hoping they drop some.

    #twinning #hungry

    79 1 6 July, 2019

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    Last weekend was our 10 year high school reunion. 🤯 My husband and I were in the same class but didn't start dating until we were 20 so I thought this would be a fun event for us to attend as a couple, Paul disagreed but ultimately conceded and we went. Many of you know my diagnosis story so I won't rehash it here but I will say how pivotal it was for me to be diagnosed at 13 in between 7th and 8th grade and faced with the choice to tell my friends and classmates about my summer diagnosis or keep it to myself. I don't know if the world was different then or I was just scared but I didn't want to be known as "the sick girl" and was worried everyone would think I was contagious or dying. Ultimately I kept my CF a secret for years and didn't tell a friend outside of my close family friends until after I graduated high school. Now that I've become far more open about CF and my life battling it I was really excited to interact with my classmates as my most genuine self, the me with CF. Every single one of the people I spoke with that night were not only incredibly kind but also more supportive than I ever could have imagined. I wish I could have gone back in time and showed 13 year old me that CF didn't have to define my relationships and that people could be so much more than I believed. I had a wonderful time and that wasn't just because of the one too many glasses of wine I had. 😂 If you're reading this and you're one of the classmates I spoke to that night I'd just like to tell you thank you for your support, acceptance, and love. Btw, Paul had a great time too and had to eat his words. 😜

    Last weekend was our 10 year high school reunion. 🤯 My husband and I were in the same class but didn't start dating until we were 20 so I thought this would be a fun event for us to attend as a couple, Paul disagreed but ultimately conceded and we went. Many of you know my diagnosis story so I won't rehash it here but I will say how pivotal it was for me to be diagnosed at 13 in between 7th and 8th grade and faced with the choice to tell my friends and classmates about my summer diagnosis or keep it to myself. I don't know if the world was different then or I was just scared but I didn't want to be known as "the sick girl" and was worried everyone would think I was contagious or dying. Ultimately I kept my CF a secret for years and didn't tell a friend outside of my close family friends until after I graduated high school. Now that I've become far more open about CF and my life battling it I was really excited to interact with my classmates as my most genuine self, the me with CF. Every single one of the people I spoke with that night were not only incredibly kind but also more supportive than I ever could have imagined. I wish I could have gone back in time and showed 13 year old me that CF didn't have to define my relationships and that people could be so much more than I believed. I had a wonderful time and that wasn't just because of the one too many glasses of wine I had. 😂 If you're reading this and you're one of the classmates I spoke to that night I'd just like to tell you thank you for your support, acceptance, and love. Btw, Paul had a great time too and had to eat his words. 😜

    67 14 5 July, 2019
    Happy Fourth of July!! We are celebrating by laying low and spending FOUR whole days off! Our family restaurant closed this weekend for a family weekend (arguably one of the best things about being a part of a family business). I am so looking forward to having nothing to do for a few days (except be Bo's lifeguard 😂) and recharge my batteries. Hoping everyone has a safe and happy 4th!

    Happy Fourth of July!! We are celebrating by laying low and spending FOUR whole days off! Our family restaurant closed this weekend for a family weekend (arguably one of the best things about being a part of a family business). I am so looking forward to having nothing to do for a few days (except be Bo's lifeguard 😂) and recharge my batteries. Hoping everyone has a safe and happy 4th!

    64 4 4 July, 2019

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    De-accessed and DONE with IV's!!! Until next time, Zerbaxa! 👋

    De-accessed and DONE with IV's!!! Until next time, Zerbaxa! 👋

    144 5 22 June, 2019
    On day 9 of 14 of this course of IV antibiotics and finally starting to feel like myself again! It's crazy to see and feel the toll CF and infections in my lungs take on my body, especially once I regain my energy and stamina. We've been doing IV's every three months or so for the past year and I am so pleased with the stability I've seen. I still get run down in between IV courses but I am thankful we have found an antibiotic that helps me bounce back in between the battles!

    On day 9 of 14 of this course of IV antibiotics and finally starting to feel like myself again! It's crazy to see and feel the toll CF and infections in my lungs take on my body, especially once I regain my energy and stamina. We've been doing IV's every three months or so for the past year and I am so pleased with the stability I've seen. I still get run down in between IV courses but I am thankful we have found an antibiotic that helps me bounce back in between the battles!

    70 11 18 June, 2019
    It's 6/5, a.k.a. 65 Roses Day! Here's the story of how the term came to be.

#Repost @cf_foundation
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Since 1965, the term #65Roses has been used by children of all ages to describe #cysticfibrosis. But, making it easier to say doesn’t make CF any easier to live with. 🌹 #CFawarenes

    It's 6/5, a.k.a. 65 Roses Day! Here's the story of how the term came to be.

    #Repost @cf_foundation
    • • • • •
    Since 1965, the term #65Roses has been used by children of all ages to describe #cysticfibrosis . But, making it easier to say doesn’t make CF any easier to live with. 🌹 #CFawarenes

    35 2 5 June, 2019
    More Great Strides highlights! 💜 I feel so lucky to have such an incredible team of people supporting me every single day.

    More Great Strides highlights! 💜 I feel so lucky to have such an incredible team of people supporting me every single day.

    103 7 3 June, 2019
    Our first Great Strides and what an incredible team we had! Team Catching Our Breath raised over $4800 and came in 1st place in fundraising for Northern Nevada! All of these people make my world go round and I am so thankful they came out to stride with me and fight for me. THANK YOU TEAM! And a very special thank you to all those who generously donated to help make CF stand for "Cure Found". 💜

    Our first Great Strides and what an incredible team we had! Team Catching Our Breath raised over $4800 and came in 1st place in fundraising for Northern Nevada! All of these people make my world go round and I am so thankful they came out to stride with me and fight for me. THANK YOU TEAM! And a very special thank you to all those who generously donated to help make CF stand for "Cure Found". 💜

    58 3 2 June, 2019
    It is absolutely perfect "Whitney weather" this weekend! It's been a splendid beautiful lupus friendly day 😌 #catchingourbreath #weekendaway

    It is absolutely perfect "Whitney weather" this weekend! It's been a splendid beautiful lupus friendly day 😌 #catchingourbreath #weekendaway

    125 10 2 June, 2019
    Almost the end of May and the end of a month dedicated to spreading awareness about Cystic Fibrosis. Did you know that "65 Roses" is actually a nickname for CF? This came from young kids with CF having difficulty pronouncing their disease and instead saying something that sounded more like "sixty five roses". The rose is now a symbol for CFers, a symbol of life, hope, strength, and growth through adversity. We planted this beautiful rose bush in our backyard this week so maybe someday we will have our very own 65 roses. 💜

    Almost the end of May and the end of a month dedicated to spreading awareness about Cystic Fibrosis. Did you know that "65 Roses" is actually a nickname for CF? This came from young kids with CF having difficulty pronouncing their disease and instead saying something that sounded more like "sixty five roses". The rose is now a symbol for CFers, a symbol of life, hope, strength, and growth through adversity. We planted this beautiful rose bush in our backyard this week so maybe someday we will have our very own 65 roses. 💜

    65 3 30 May, 2019

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    CF Awareness: did you know that I take 25+ pills every day? Refilling my pill case tonight and I did a count of my current regimen - 8 in the morning, 7 at night, and 10-15 pancreatic enzymes throughout the day depending on what and how much I eat. Still crazy for me when I see it on paper! 🤯 *Every CFer is different and some take fewer pills while others take many more (especially post transplant). Every regimen is uniquely tailored to that CFer.*

    CF Awareness: did you know that I take 25+ pills every day? Refilling my pill case tonight and I did a count of my current regimen - 8 in the morning, 7 at night, and 10-15 pancreatic enzymes throughout the day depending on what and how much I eat. Still crazy for me when I see it on paper! 🤯 *Every CFer is different and some take fewer pills while others take many more (especially post transplant). Every regimen is uniquely tailored to that CFer.*

    69 8 8 May, 2019
    Finding a clinic and care team that is perfect for you is tough and often limited by your geography. Lots of CFers venture out of their home state every 3ish months just to get the best care, but having a team so far away can also be challenging. My clinic is two hours away from my home but I have an incredible team who stays in close contact with me between my in person clinic visits. Just yesterday my nurse navigator emailed me an order for a sputum culture so I wouldn't have to deal with getting the order from the lab and we could check in on these lungs since I don't have clinic for another month. I love UC Davis and I am so thankful I switched six years ago even if it means traveling for appointments and hospital stays. I feel safe at Davis. A reminder to all my CFers that seeking out a care team that is a match for you may not always be the most convenient but it's so worth it. .
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#cf #cfawareness #cysticfibrosisawareness #cysticfibrosis #cysticfibrosisfighter #cfirl #curecf #chronicillness #careteam #clinic #ucdavismed #ucdavishealth #cfclinic #geneticillness #adultcf #lungdisease #lungs #justbreathe #advocate #catchingourbreath

    Finding a clinic and care team that is perfect for you is tough and often limited by your geography. Lots of CFers venture out of their home state every 3ish months just to get the best care, but having a team so far away can also be challenging. My clinic is two hours away from my home but I have an incredible team who stays in close contact with me between my in person clinic visits. Just yesterday my nurse navigator emailed me an order for a sputum culture so I wouldn't have to deal with getting the order from the lab and we could check in on these lungs since I don't have clinic for another month. I love UC Davis and I am so thankful I switched six years ago even if it means traveling for appointments and hospital stays. I feel safe at Davis. A reminder to all my CFers that seeking out a care team that is a match for you may not always be the most convenient but it's so worth it. .
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    #cf #cfawareness #cysticfibrosisawareness #cysticfibrosis #cysticfibrosisfighter #cfirl #curecf #chronicillness #careteam #clinic #ucdavismed #ucdavishealth #cfclinic #geneticillness #adultcf #lungdisease #lungs #justbreathe #advocate #catchingourbreath

    31 1 4 May, 2019

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    Visited my Ear, Nose & Throat Specialist (ENT) today. I've been seeing the same ENT since I was diagnosed at 13 which was almost 15 years ago now 🤯 and I love her and trust her. Cystic Fibrosis plagues my sinuses in nearly the same way it does my lungs. I grow and catch nasty bugs that make themselves at home in the thick, sticky mucus in my sinus passageways. This causes inflammation and constant infection that we try to keep from commingling with the infection in my lungs. I do constant sinus rinses at home, nasal sprays, and antibiotics to help keep the sinus issues to a dull roar but usually we need to do surgery to clean and rinse my sinuses manually about once a year. My doctor calls the mucus "rubber cement" and I always feel so much better when I have fresh clean sinuses post-OP. I'm not due for surgery just yet but today we took a culture from my sinuses to check in on what's growing in there and causing me irritation at the moment. Every CFer has different manifestations of their symptoms and degrees of severity and for me my sinus problems require almost as much attention/care as my lungs, then all my GI/digestive issues are a distant third place. I don't think many people realize that CF is a systemic illness that extends far beyond just my lungs and the treatments and pills I take every day. I only have a small portion of my pancreas left that still works, an enlarged liver, and no gallbladder all due to the thick mucus that makes it's way through my body and scars everything it touches. CF makes it difficult to absorb and break down fats and proteins so weight is tough to gain and difficult to keep on because our lungs are working so hard. Many CFers require assistance from a feeding tube at some point in their disease progression just to maintain weight to breath. We can suffer from bone loss due to poor nutrition absorption, clubbed fingers from poor oxygenation, and reproductive issues (thanks mucus). CF is ugly and scary and mean and I hope that people realize that even though I don't look sick and I'm stable at the moment, it's  still a fight every day. I hope that a cure is on the horizon for all of us in the trenches. 💜

    Visited my Ear, Nose & Throat Specialist (ENT) today. I've been seeing the same ENT since I was diagnosed at 13 which was almost 15 years ago now 🤯 and I love her and trust her. Cystic Fibrosis plagues my sinuses in nearly the same way it does my lungs. I grow and catch nasty bugs that make themselves at home in the thick, sticky mucus in my sinus passageways. This causes inflammation and constant infection that we try to keep from commingling with the infection in my lungs. I do constant sinus rinses at home, nasal sprays, and antibiotics to help keep the sinus issues to a dull roar but usually we need to do surgery to clean and rinse my sinuses manually about once a year. My doctor calls the mucus "rubber cement" and I always feel so much better when I have fresh clean sinuses post-OP. I'm not due for surgery just yet but today we took a culture from my sinuses to check in on what's growing in there and causing me irritation at the moment. Every CFer has different manifestations of their symptoms and degrees of severity and for me my sinus problems require almost as much attention/care as my lungs, then all my GI/digestive issues are a distant third place. I don't think many people realize that CF is a systemic illness that extends far beyond just my lungs and the treatments and pills I take every day. I only have a small portion of my pancreas left that still works, an enlarged liver, and no gallbladder all due to the thick mucus that makes it's way through my body and scars everything it touches. CF makes it difficult to absorb and break down fats and proteins so weight is tough to gain and difficult to keep on because our lungs are working so hard. Many CFers require assistance from a feeding tube at some point in their disease progression just to maintain weight to breath. We can suffer from bone loss due to poor nutrition absorption, clubbed fingers from poor oxygenation, and reproductive issues (thanks mucus). CF is ugly and scary and mean and I hope that people realize that even though I don't look sick and I'm stable at the moment, it's still a fight every day. I hope that a cure is on the horizon for all of us in the trenches. 💜

    53 13 16 April, 2019
    Let's have a moment to celebrate our support systems: CF spouses, parents, best friends, and even care teams. We couldn't do it without you! 💜 I feel so very lucky to have my husband who is my very best advocate and sounding board. He is not the entirety of my support system but most definitely the core. A husband was not something I ever saw in my future with Cystic Fibrosis so I thank my lucky stars every day for him. 🥰

    Let's have a moment to celebrate our support systems: CF spouses, parents, best friends, and even care teams. We couldn't do it without you! 💜 I feel so very lucky to have my husband who is my very best advocate and sounding board. He is not the entirety of my support system but most definitely the core. A husband was not something I ever saw in my future with Cystic Fibrosis so I thank my lucky stars every day for him. 🥰

    119 11 7 April, 2019
    Surprise hospital admit brought to you by CF: GI edition 🤦‍♀️ Sunday afternoon I started experiencing terrible abdominal pain and nausea and when it only got worse as the night went on we pulled the trigger and went to the ER, something I haven't done in a very long time. After an abdominal CT, labs, and a couple hours of waiting we discovered I had a small bowel obstruction. This was my first experience with bowel obstructions but lots of CFers deal with them early and often throughout their lives. This has to do with thick mucus that makes it's way through our digestive tracts (not dissimilar to our lungs) and clogs up the works. Not only is it very painful but it also can lead to surgical intervention if it can't be resolved with rest, fluids, and medication. It may not be the most glamorous of hospital admissions but this was definitely the sickest I've been in a long time. Three days of no food and water and lots of IV fluids and meds did the trick and I'm thankful to say that by Tuesday evening I was back at home where I belong. So many people that I encountered in the hospital and even within my own family didn't understand that CF extends far beyond the lungs and that this issue was 100% CF related. The first day I was inpatient it was a little embarrassing for me to talk about bowel movements and mucus in my gut but this is CF 🤷‍♀️. The hardest part of this stay was being in Reno and away from my care team in Davis but that is always the issue with emergent visits and all in all things went well and I'm so incredibly thankful that I didn't have to have surgery. Special thank you to my husband who was the greatest support I ever could have asked for these past few days and dried my tears when I was so scared that first night. 💑 Happy to be on the other side of this particular battle and still winning the war. Drink your Miralax CFers!

    Surprise hospital admit brought to you by CF: GI edition 🤦‍♀️ Sunday afternoon I started experiencing terrible abdominal pain and nausea and when it only got worse as the night went on we pulled the trigger and went to the ER, something I haven't done in a very long time. After an abdominal CT, labs, and a couple hours of waiting we discovered I had a small bowel obstruction. This was my first experience with bowel obstructions but lots of CFers deal with them early and often throughout their lives. This has to do with thick mucus that makes it's way through our digestive tracts (not dissimilar to our lungs) and clogs up the works. Not only is it very painful but it also can lead to surgical intervention if it can't be resolved with rest, fluids, and medication. It may not be the most glamorous of hospital admissions but this was definitely the sickest I've been in a long time. Three days of no food and water and lots of IV fluids and meds did the trick and I'm thankful to say that by Tuesday evening I was back at home where I belong. So many people that I encountered in the hospital and even within my own family didn't understand that CF extends far beyond the lungs and that this issue was 100% CF related. The first day I was inpatient it was a little embarrassing for me to talk about bowel movements and mucus in my gut but this is CF 🤷‍♀️. The hardest part of this stay was being in Reno and away from my care team in Davis but that is always the issue with emergent visits and all in all things went well and I'm so incredibly thankful that I didn't have to have surgery. Special thank you to my husband who was the greatest support I ever could have asked for these past few days and dried my tears when I was so scared that first night. 💑 Happy to be on the other side of this particular battle and still winning the war. Drink your Miralax CFers!

    66 17 4 April, 2019
    Ever feel at a loss for posts? I do. So here's a Bo picture and an update on life in general. IV's are all done for now and I'm feeling pretty good. I struggle with a couple of things consistently: night sweats and generalized fatigue. Those two things are still lingering but my episodes of shortness of breath have definitely decreased since we started that last IV course. Now it's back to my usual regimen until next clinic in May (after our big birthday Disney trip 🎉). I never know what to talk about when things are status quo so if you have ideas, inspiration, questions, comments, etc. send them my way! Thankful to just be chugging along in this fight 🚂🚂🚂.

    Ever feel at a loss for posts? I do. So here's a Bo picture and an update on life in general. IV's are all done for now and I'm feeling pretty good. I struggle with a couple of things consistently: night sweats and generalized fatigue. Those two things are still lingering but my episodes of shortness of breath have definitely decreased since we started that last IV course. Now it's back to my usual regimen until next clinic in May (after our big birthday Disney trip 🎉). I never know what to talk about when things are status quo so if you have ideas, inspiration, questions, comments, etc. send them my way! Thankful to just be chugging along in this fight 🚂🚂🚂.

    74 4 27 March, 2019
    As many of you know, the film Five Feet Apart hits theaters today and I'm so excited to see CF on the big screen and say "that's my life! That's just what it's like!". More than anything I hope that this film brings awareness and funding to CF research but also brings us together as a community. An important part of this movie is that one of the CFers depicted in it has Burkholderia Cepacia (aka Burkholderia or B. Cepacia) and I just wanted to talk about that a little since I also have Burkholderia. Burkholderia is a serious bacteria that is difficult to treat, resistant to many antibiotics, fast growing, and highly contagious amongst CFers. I contracted Burkholderia around 12 years ago but I don't know how or when 🤷‍♀️. B. Cepacia is environmental in some regions and sometimes found in soil, it can also be picked up from another CFer. If you've followed my story for long then you know that we are regularly treating me with multiple antibiotics to keep my bugs in check, typically B. Cepacia is the one we are focused on. While B. Cepacia has made my life and treatment more complicated, it hasn't ended my fight. Only 3% of CFers culture B. Cepacia and I just happen to be the only patient at my clinic who does. While I feel lucky and strong to be fighting this bug literally 24/7 with my handy dandy IV pump, these drugs are simply short term containment for this bug that is always changing and becoming resistant to whatever we throw at it. New research and drug therapies are key in fighting this nasty organism. Currently transplant with this organism is questionable, risky, and done at only select centers nationwide. B. Cepacia is so aggressive that it can reappear even in the new donor lungs and has a high post transplant mortality rate. I am so hopeful that new research and drug therapies will lead to successful transplants in all B. Cepacia positive patients and give patients like me a second chance if we need it. Please remember that while this is all serious and scary, I'm still here and a B. Cepacia infection is not a death sentence. Research is key to beat B. Cepacia & CF and I am thankful to Five Feet Apart for the opportunity to spread our message. 💜

    As many of you know, the film Five Feet Apart hits theaters today and I'm so excited to see CF on the big screen and say "that's my life! That's just what it's like!". More than anything I hope that this film brings awareness and funding to CF research but also brings us together as a community. An important part of this movie is that one of the CFers depicted in it has Burkholderia Cepacia (aka Burkholderia or B. Cepacia) and I just wanted to talk about that a little since I also have Burkholderia. Burkholderia is a serious bacteria that is difficult to treat, resistant to many antibiotics, fast growing, and highly contagious amongst CFers. I contracted Burkholderia around 12 years ago but I don't know how or when 🤷‍♀️. B. Cepacia is environmental in some regions and sometimes found in soil, it can also be picked up from another CFer. If you've followed my story for long then you know that we are regularly treating me with multiple antibiotics to keep my bugs in check, typically B. Cepacia is the one we are focused on. While B. Cepacia has made my life and treatment more complicated, it hasn't ended my fight. Only 3% of CFers culture B. Cepacia and I just happen to be the only patient at my clinic who does. While I feel lucky and strong to be fighting this bug literally 24/7 with my handy dandy IV pump, these drugs are simply short term containment for this bug that is always changing and becoming resistant to whatever we throw at it. New research and drug therapies are key in fighting this nasty organism. Currently transplant with this organism is questionable, risky, and done at only select centers nationwide. B. Cepacia is so aggressive that it can reappear even in the new donor lungs and has a high post transplant mortality rate. I am so hopeful that new research and drug therapies will lead to successful transplants in all B. Cepacia positive patients and give patients like me a second chance if we need it. Please remember that while this is all serious and scary, I'm still here and a B. Cepacia infection is not a death sentence. Research is key to beat B. Cepacia & CF and I am thankful to Five Feet Apart for the opportunity to spread our message. 💜

    33 7 20 hours ago
    CF Genetics Part ✌
In a previous post I wrote about how a person gets CF, now let's chat about what happens next. Since CF requires a mutation from each parent that means that each CFer has TWO mutations of the CFTR gene. What is the CFTR gene, you ask? Well our friends over at Cystic Fibrosis News Daily explain it as, "the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is the gene responsible for the movements of negatively charged particles known as chloride ions into and out of cells". Chloride is a component of sodium chloride (a.k.a. salt found in sweat) and is super important in controlling water movement into and out of the cells, which in a normal person results in thin, easy-to-move mucus. In a CFer, these CFTR genes are mutated, nonfunctioning and/or partially functioning. The crazy thing about CF is that each mutation combination can present differently in each patient, and there are over 180 different known mutations. 🤯 Some mutations lead to more severe lung issues or sinus problems while others lead to more G.I. symptoms. Ultimately, all of our lungs suck but depending on your mutations it can be a sliding scale. Side note: When I was first diagnosed I was told I had a "mild case" and that always made me angry because no matter how mild my life was still completely changed by this diagnosis. Telling me I had a "mild case" made my battle feel so insignificant. Of course I'm so thankful for my health throughout the years and the fact that my body fought hard all on it's own for 13 undiagnosed years. Now back to the mutations... SCIENCE IS SO COOL GUYS because research has led to THREE different medications that are meant to actually fix the mutation in the cells and help correct the problem at a cellular level. Of course there are still bugs because these meds are new and pretty specific to certain mutations, but the fact that we are seeing this kind of therapy is so promising! My specific mutations are DeltaF508 & CFTRdele2. The first of my mutations is one of the most common and seen as easier to identify and treat in the future but my second is a little more tricky... (cont'd in comments) --->

    CF Genetics Part ✌
    In a previous post I wrote about how a person gets CF, now let's chat about what happens next. Since CF requires a mutation from each parent that means that each CFer has TWO mutations of the CFTR gene. What is the CFTR gene, you ask? Well our friends over at Cystic Fibrosis News Daily explain it as, "the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is the gene responsible for the movements of negatively charged particles known as chloride ions into and out of cells". Chloride is a component of sodium chloride (a.k.a. salt found in sweat) and is super important in controlling water movement into and out of the cells, which in a normal person results in thin, easy-to-move mucus. In a CFer, these CFTR genes are mutated, nonfunctioning and/or partially functioning. The crazy thing about CF is that each mutation combination can present differently in each patient, and there are over 180 different known mutations. 🤯 Some mutations lead to more severe lung issues or sinus problems while others lead to more G.I. symptoms. Ultimately, all of our lungs suck but depending on your mutations it can be a sliding scale. Side note: When I was first diagnosed I was told I had a "mild case" and that always made me angry because no matter how mild my life was still completely changed by this diagnosis. Telling me I had a "mild case" made my battle feel so insignificant. Of course I'm so thankful for my health throughout the years and the fact that my body fought hard all on it's own for 13 undiagnosed years. Now back to the mutations... SCIENCE IS SO COOL GUYS because research has led to THREE different medications that are meant to actually fix the mutation in the cells and help correct the problem at a cellular level. Of course there are still bugs because these meds are new and pretty specific to certain mutations, but the fact that we are seeing this kind of therapy is so promising! My specific mutations are DeltaF508 & CFTRdele2. The first of my mutations is one of the most common and seen as easier to identify and treat in the future but my second is a little more tricky... (cont'd in comments) --->

    58 9 22 February, 2019
    Fatigue -- Guilt-- Anxiety 
These three unsung villains of chronic illness cause me a whole lot of grief. Fatigue is a given when you're sick and even welcomed, "get some rest honey, your body needs to heal". But what happens when your body ALWAYS needs to heal but the show must go on? Guilt happens. When I can't do everything I had hoped, I'm too tired to show up, or I just can't muster the energy, I feel so much guilt. I feel bad for letting people down or, even worse, letting myself down. I feel bad for this body and I feel bad for expecting so much (or not enough) from this body. I often feel guilty for things that make no sense and that's when anxiety pays a visit. Am I a burden? Do people think I'm faking it? Maybe I just think I'm sick? Am I making myself sicker by doing too much? Am I not doing enough? Will that make me sicker? Like I said, nonsense thoughts but they are always there. I think that no matter the illness there is always a component of these three feelings (fatigue, guilt, anxiety) in everything you do. It's part of the daily struggle of chronic illness and lately it's been tough to overcome. I lead a busy life, which is SO important because it means I lead a FULL life, but it takes a toll. Sitting back today and telling myself it's okay to be exhausted, it's okay to not do everything all the time, and it's okay to just be okay. If you're in the same boat just know that you are enough and those that love you will always be there when your batteries are recharged. 🔋
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#cysticfibrosis #cfirl #cfawareness #chronicillness #cfstrong #cffighter #cffoundation #cysticfibrosisawareness #invisibleillness #fatigue #anxiety #lungdisease #dayinthelife #breathe #lungs #fev #fev1 #lungtransplant #organdonation #cysticfibrosislife #cyster #fibro #cysticfibrosisfighter #catchingourbreath #justbreathe #sixtyfiveroses #65roses #respiratorydisease

    Fatigue -- Guilt-- Anxiety
    These three unsung villains of chronic illness cause me a whole lot of grief. Fatigue is a given when you're sick and even welcomed, "get some rest honey, your body needs to heal". But what happens when your body ALWAYS needs to heal but the show must go on? Guilt happens. When I can't do everything I had hoped, I'm too tired to show up, or I just can't muster the energy, I feel so much guilt. I feel bad for letting people down or, even worse, letting myself down. I feel bad for this body and I feel bad for expecting so much (or not enough) from this body. I often feel guilty for things that make no sense and that's when anxiety pays a visit. Am I a burden? Do people think I'm faking it? Maybe I just think I'm sick? Am I making myself sicker by doing too much? Am I not doing enough? Will that make me sicker? Like I said, nonsense thoughts but they are always there. I think that no matter the illness there is always a component of these three feelings (fatigue, guilt, anxiety) in everything you do. It's part of the daily struggle of chronic illness and lately it's been tough to overcome. I lead a busy life, which is SO important because it means I lead a FULL life, but it takes a toll. Sitting back today and telling myself it's okay to be exhausted, it's okay to not do everything all the time, and it's okay to just be okay. If you're in the same boat just know that you are enough and those that love you will always be there when your batteries are recharged. 🔋
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    #cysticfibrosis #cfirl #cfawareness #chronicillness #cfstrong #cffighter #cffoundation #cysticfibrosisawareness #invisibleillness #fatigue #anxiety #lungdisease #dayinthelife #breathe #lungs #fev #fev1 #lungtransplant #organdonation #cysticfibrosislife #cyster #fibro #cysticfibrosisfighter #catchingourbreath #justbreathe #sixtyfiveroses #65roses #respiratorydisease

    62 5 31 January, 2019

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    Last weekend was our 10 year high school reunion. 🤯 My husband and I were in the same class but didn't start dating until we were 20 so I thought this would be a fun event for us to attend as a couple, Paul disagreed but ultimately conceded and we went. Many of you know my diagnosis story so I won't rehash it here but I will say how pivotal it was for me to be diagnosed at 13 in between 7th and 8th grade and faced with the choice to tell my friends and classmates about my summer diagnosis or keep it to myself. I don't know if the world was different then or I was just scared but I didn't want to be known as "the sick girl" and was worried everyone would think I was contagious or dying. Ultimately I kept my CF a secret for years and didn't tell a friend outside of my close family friends until after I graduated high school. Now that I've become far more open about CF and my life battling it I was really excited to interact with my classmates as my most genuine self, the me with CF. Every single one of the people I spoke with that night were not only incredibly kind but also more supportive than I ever could have imagined. I wish I could have gone back in time and showed 13 year old me that CF didn't have to define my relationships and that people could be so much more than I believed. I had a wonderful time and that wasn't just because of the one too many glasses of wine I had. 😂 If you're reading this and you're one of the classmates I spoke to that night I'd just like to tell you thank you for your support, acceptance, and love. Btw, Paul had a great time too and had to eat his words. 😜

    Last weekend was our 10 year high school reunion. 🤯 My husband and I were in the same class but didn't start dating until we were 20 so I thought this would be a fun event for us to attend as a couple, Paul disagreed but ultimately conceded and we went. Many of you know my diagnosis story so I won't rehash it here but I will say how pivotal it was for me to be diagnosed at 13 in between 7th and 8th grade and faced with the choice to tell my friends and classmates about my summer diagnosis or keep it to myself. I don't know if the world was different then or I was just scared but I didn't want to be known as "the sick girl" and was worried everyone would think I was contagious or dying. Ultimately I kept my CF a secret for years and didn't tell a friend outside of my close family friends until after I graduated high school. Now that I've become far more open about CF and my life battling it I was really excited to interact with my classmates as my most genuine self, the me with CF. Every single one of the people I spoke with that night were not only incredibly kind but also more supportive than I ever could have imagined. I wish I could have gone back in time and showed 13 year old me that CF didn't have to define my relationships and that people could be so much more than I believed. I had a wonderful time and that wasn't just because of the one too many glasses of wine I had. 😂 If you're reading this and you're one of the classmates I spoke to that night I'd just like to tell you thank you for your support, acceptance, and love. Btw, Paul had a great time too and had to eat his words. 😜

    67 14 5 July, 2019

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    Happy Fourth of July!! We are celebrating by laying low and spending FOUR whole days off! Our family restaurant closed this weekend for a family weekend (arguably one of the best things about being a part of a family business). I am so looking forward to having nothing to do for a few days (except be Bo's lifeguard 😂) and recharge my batteries. Hoping everyone has a safe and happy 4th!

    Happy Fourth of July!! We are celebrating by laying low and spending FOUR whole days off! Our family restaurant closed this weekend for a family weekend (arguably one of the best things about being a part of a family business). I am so looking forward to having nothing to do for a few days (except be Bo's lifeguard 😂) and recharge my batteries. Hoping everyone has a safe and happy 4th!

    64 4 4 July, 2019

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