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catchingourbreath - 507 posts

    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. 💜

    26 6 15 March, 2019

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    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) --->

    53 9 3 hours ago

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    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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    .
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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

    60 5 31 January, 2019

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    We arrived at the Denver home of Steve's cousins, Paul and Luci. We are pretty tired. This morning we left Socorro, New Mexico with 9°F temp. We had sunshine all day! The last few days of snow in northern New Mexico made for a beautiful landscape. Then once in southern Colorado the temp climbed to 52°F. Like clockwork we were welcomed by traffic once we approached the Denver area.

Once at our cousins' home, we unloaded and got situated in their beautiful home. We brought all the food from our pantry and frig in the trailer. (Organized on the counter now). We didn't want to risk drawing rodents to our pantry while the trailer is in storage. (We didn't have time to donate the food to a food pantry. Next time we will plan better). Now it's a perfect time to plan our menus around what food we have on hand.

We are grateful to stay at Paul and Luci's home while they are away for several weeks. This way, too, they won't have an unoccupied home.

Time to catch our breath with this 3-week retreat together.

    We arrived at the Denver home of Steve's cousins, Paul and Luci. We are pretty tired. This morning we left Socorro, New Mexico with 9°F temp. We had sunshine all day! The last few days of snow in northern New Mexico made for a beautiful landscape. Then once in southern Colorado the temp climbed to 52°F. Like clockwork we were welcomed by traffic once we approached the Denver area.

    Once at our cousins' home, we unloaded and got situated in their beautiful home. We brought all the food from our pantry and frig in the trailer. (Organized on the counter now). We didn't want to risk drawing rodents to our pantry while the trailer is in storage. (We didn't have time to donate the food to a food pantry. Next time we will plan better). Now it's a perfect time to plan our menus around what food we have on hand.

    We are grateful to stay at Paul and Luci's home while they are away for several weeks. This way, too, they won't have an unoccupied home.

    Time to catch our breath with this 3-week retreat together.

    23 6 4 January, 2019

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    Note to self. It may never be too cold for a beach day, but it can be too windy! 💨🌪

    Note to self. It may never be too cold for a beach day, but it can be too windy! 💨🌪

    29 1 12 October, 2018
    Last week we stayed 4 nights at Prairie Dog State Park near Norton, Kansas. The sites were ample sized with electric and water hookups and a dump station. There is a prairie dog town, but these little critters are skittish so we don't have photos to share. We enjoyed two tandem rides and some evening walks. The adobe home and its setting were picturesque. We really soaked up some R&R as we shifted gears from our Midwestern Loop to an upcoming Colorado stay. Our trip through the Midwest was quite enjoyable. We had visits with 117 family members and friends. Indeed we are thankful!

    Last week we stayed 4 nights at Prairie Dog State Park near Norton, Kansas. The sites were ample sized with electric and water hookups and a dump station. There is a prairie dog town, but these little critters are skittish so we don't have photos to share. We enjoyed two tandem rides and some evening walks. The adobe home and its setting were picturesque. We really soaked up some R&R as we shifted gears from our Midwestern Loop to an upcoming Colorado stay. Our trip through the Midwest was quite enjoyable. We had visits with 117 family members and friends. Indeed we are thankful!

    31 5 8 September, 2018

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    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) --->

    53 9 3 hours ago

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    We arrived at the Denver home of Steve's cousins, Paul and Luci. We are pretty tired. This morning we left Socorro, New Mexico with 9°F temp. We had sunshine all day! The last few days of snow in northern New Mexico made for a beautiful landscape. Then once in southern Colorado the temp climbed to 52°F. Like clockwork we were welcomed by traffic once we approached the Denver area.

Once at our cousins' home, we unloaded and got situated in their beautiful home. We brought all the food from our pantry and frig in the trailer. (Organized on the counter now). We didn't want to risk drawing rodents to our pantry while the trailer is in storage. (We didn't have time to donate the food to a food pantry. Next time we will plan better). Now it's a perfect time to plan our menus around what food we have on hand.

We are grateful to stay at Paul and Luci's home while they are away for several weeks. This way, too, they won't have an unoccupied home.

Time to catch our breath with this 3-week retreat together.

    We arrived at the Denver home of Steve's cousins, Paul and Luci. We are pretty tired. This morning we left Socorro, New Mexico with 9°F temp. We had sunshine all day! The last few days of snow in northern New Mexico made for a beautiful landscape. Then once in southern Colorado the temp climbed to 52°F. Like clockwork we were welcomed by traffic once we approached the Denver area.

    Once at our cousins' home, we unloaded and got situated in their beautiful home. We brought all the food from our pantry and frig in the trailer. (Organized on the counter now). We didn't want to risk drawing rodents to our pantry while the trailer is in storage. (We didn't have time to donate the food to a food pantry. Next time we will plan better). Now it's a perfect time to plan our menus around what food we have on hand.

    We are grateful to stay at Paul and Luci's home while they are away for several weeks. This way, too, they won't have an unoccupied home.

    Time to catch our breath with this 3-week retreat together.

    23 6 4 January, 2019