Wednesday, May 31, 2017

CF Awareness Month Day 31 - Thank You & My Birthday!


Whew!!  We made it to the end of the CF Awareness Month!!  Thanks so much to everyone that's read along as I post on the daily topics - I've enjoyed the chance to talk more about my own personal experience with CF (plus it's given me a great, productive thing to do since I've been in the hospital most of the month!), and I hope it's been enlightening and/or encouraging to people who have followed along.

There are always lots of "Thank You"s that are due when you live with a chronic illness, especially when you're going through a rough patch of health with it.  I've written about them and their support a lot this month, but obviously a huge, daily "thank you" is due to my wonderful parents and husband for their unfailing love and support through all seasons, especially the rough ones.  Thank you to my extended family members for your encouragement and love and for checking in on me often.  Thank you to my wonderful friends who are able to listen to my tearful sorrows, and encourage me when need be, but still treat me the same as ever, always ready with a joke and to laugh with me about something until it hurts.  In particular, thank you to my sweet CF friend staying down the hall from me this past week, for understanding my humor and helping me keep a light heart and positive attitude each day. Thank you to my nurses and other hospital staff who have taken such good care of me and shown such patience and cheerfulness while I was in the hospital feeling like poo most of the month.  Thank you to the CFF and other similar organizations for their endless fight against cystic fibrosis on behalf of myself and all others fighting this disease.  And thank you to every person who has donated time, money, or social media space to raise awareness for CF and help us fight on toward a cure!

*Now, in other news - IT'S MY BIRTHDAY!!  YAY!!

And not just any birthday, mind you - it's my GOLDEN birthday!  Today, I turn 31 on May 31st.  I've literally waited my whole life for this birthday - the latest golden/lucky birthday a person can have!  😀

This is the first birthday I've ever had to spend in the hospital, so some might say this birthday is not actually so "lucky" - but I'm going to go ahead and say that it IS still "lucky", because I've been able to celebrate in a new way this year.  I've finally started feeling a little better these last 3 days or so, so that is a great gift!  And I've been able to feel the love from my nurses and RTs as they celebrate my birthday with me - the first thing I heard this morning was when my nurse walked in and said "HAPPY BIRTHDAY!", and later my breakfast tray came with a card signed by all the nurses and a "Birthday Girl" sash to wear.  My hubby brought me a yummy breakfast, along with a Jane Austen mug (my hero), and a surprisingly stylish assortment of new clothes (well done, boo!), and then a selection of favorite drinks to choose from this afternoon.  A group of friends from my old job came up at lunch to bring me food, cake, balloons, and some great stories to make us all laugh, and family from both sides stopped by for little mini-celebrations.  Overall, I've been able to see a lot more people than I normally do on my birthday - it's been a fun day!

PLUS, since today was my birthday, I was able to convince the surgeon to put off my port placement one more day, haha!  It's a small victory, but I'll take it. 😉

31 years with CF is nothing to scoff at!  Somehow it feels fitting that my birthday comes on the last day of CF Awareness month.  I'm so grateful for the amazing life that has been packed into those 31 years, and am praying and fighting for lots more to follow!


My birthday drink selection - boba milky tea, smoothie king, and an iced vanilla latte.  I'm a little spoiled. :)

Tuesday, May 30, 2017

CF Awareness Month Day 30 - Raising Awareness


I hope you've found this month's blog posts informative and enlightening about cystic fibrosis and what it's like to live with the disease.  Raising awareness of this disease and what it does to the people who live with it is the stepping stone to fundraising, which is the stepping stone to finding a cure!  Please feel free to post links about CF anytime on your social media - whether it's an inspirational video, a blog, a news article, etc.  All of this raises awareness of CF in the general public.  The next step is to join a fundraiser - Great Strides or a CF Climb are two very popular events that happen throughout the country each year.  Get involved when you can to spread awareness and raise those cure-seeking funds!

Also, if you have CF, try not to be afraid to talk about it to other people!  We are the best source of raising awareness, because we can provide a "face" to this disease that people can relate to on a personal level.  Blogging, vlogging, posting, and even just educating people when they have questions are all fantastic ways for us to raise awareness about this aspect of our lives. 😊

Monday, May 29, 2017

CF Awareness Month Day 29 - My Wish for CF



Well this one's easy!  I wish for a CURE!!  And when that cure comes, I hope it is able to help both young and healthy CF lungs and old and damaged ones (me!).

In the meantime, my wish is for these research companies to continue developing new and more advanced generations of "almost cure" medicines so that as many CF warriors as possible can make it to the time of finding a cure!

Sorry this is short, but this one doesn't need to go very deep, I don't think. 😊

Sunday, May 28, 2017

CF Awareness Month Day 28 - What Not to Say


Since diving into the world of CF social media a few years ago, where I've been able to meet friends with CF and follow people's lives through blogs and vlogs, I've realized there are no hard and fast "What-not-to-say" rules that hold true for all of us.  Just because we all have CF doesn't negate the fact we're all still individuals with unique life experiences that shape the way we respond to people commenting on our disease and struggles.  Some things really REALLY bother some CF patients, while others really just don't care.  (Case in point:  I always pause and spend a good 15-20 seconds trying to figure out what I should call other people with CF in my blog, because some people get offended by the term "CFer", others by always being called a "CF patient", and still others detest the terms "cyster" and "fibro", etc.)

Also, I've found that, as time goes by and I experience more of life, some of the phrases that used to bother me no longer do, but a handful of new comments will really make me scowl.

I used to HATE when doctors or other people referred to going into the hospital and/or getting IVs as a "tune up," especially back before I was routinely in the hospital a couple times a year.  I found it offensive to talk about my body as if it were a car engine that just needed a little tweaking.  Nowadays, it's still not a term I myself use very often, but hearing someone else say it doesn't raise my hackles like it used to.

It also drives me CRAZY when random people comment on my cough in public and offer me cough drops, but I realize I can't really hold that against them.  I've written on this topic before.

Some people with CF hate it when people make comments on how much food they eat, or say something like "I wish I could eat like you do!"  However, this one honestly doesn't bother me.  This actually is one of the rare times I usually feel comfortable seizing an opportunity to educate someone on CF.  Maybe it's because I personally view this as the one perk that comes with having CF - I happen to really enjoy the fact that I can eat so much food and not be a gigantic size, so I don't mind laughing along with them.  But know that these kinds of comments can really offend some people with CF, especially if weight gain is an ongoing challenge.

Also, some people really hate it when they're sick and someone makes the comment "You're looking really good!" or "But you really look so healthy!"  I guess this bothers people because they actually feel like poop and want other people to realize they don't fell well.  Again, though, this is one that doesn't bother me personally.  In fact, I appreciate it when I get feedback that I don't look as awful as I feel, or that I still look "totally normal," because I know if I did look the way I feel, I would look really scary!!

I get tired of being asked "How are you feeling?" 57 times a day by people around me who know I've not been feeling well.  Once or twice is fine.  Beyond that it gets annoying.  I promise to tell you if I can feel any real change.

Also, I currently really dislike people saying things like "You're such an inspiration!" when I'm sick.  This makes me a little angry.  I don't want to be your inspiration just because I'm going through a difficult struggle with my health that I have absolutely zero control over.  I'm really just surviving it the best I can, just the same as you would.  I'm not doing anything inspirational other than suffering, and I would give almost anything to NOT be in this position right now.  If I'm going to inspire you, please let it be based on something I've worked for in life, something I've accomplished, or some positive impact on the world I was able to make.

That's all I can think of for now.  Really, my advice is just to get to know the person with CF as an individual, and you should be able to get a good idea of their sense of humor and what ticks them off and translate that into how you talk about their illness. :)



Saturday, May 27, 2017

CF Awareness Month Day 27 - Inspirations


I'd say one of the biggest inspirations in my life right now is my grandmother (Oma).  Sadly, Oma passed away in March of this year.  But she made it to almost 91, and crammed a lot of living into those 91 years!

Part of what makes her so inspirational to me and my fight against cystic fibrosis is this:

My grandfather had a stroke that left him permanently disabled and confined to a wheelchair in 1997.  Eventually, he came back home, where my grandmother took care of him.  Then, two days before her 73rd birthday in April 1999, my grandmother ALSO had a stroke that left her permanently disabled and confined to a wheelchair.  This was a hard blow, and required a lot of adjustment and hard work from the family to help make sure both my grandparents would be taken care of.

But Oma wasn't about to let this knock her down for good.  Despite the frustrations of having half of her body permanently paralyzed, she was determined to keep on living the way she wanted to be living.  She wanted to live at home, in her house, so she made it happen.  It was hard work and sometimes mentally exhausting continuously finding people to hire and help out with the cleaning, cooking, yard work, driving to and from doctor's appointments, grocery shopping, etc., but she made it work.  She also took charge of my grandfather's care again, finding rehab facilities for him to live in, and eventually finding a way to move him back home with her until he passed away.  She set her goal, and she was determined to make it work - and make it work, she did, for 15 years.

Aside from persevering through the mental exhaustion of running a house when you are elderly and paralyzed, as well as keeping up with never-ending paperwork for insurance, retirement, my grandfather's living arrangements, etc., Oma also dealt with physical frustrations every day.  No longer able to walk on her own, everyday tasks were now either 10x more difficult or flat out impossible.  Things like getting in and out of bed, using the bathroom, getting dressed in the morning, and even eating and drinking took a lot of effort, energy, and concentration.  But she never let that get her down.  For 18 years, she jumped at any and every chance to receive physical therapy to keep herself as strong as possible.

Most importantly, she remained joyful and kind, and definitely kept her sense of humor.  Everyday life was difficult, but she loved each day she was given.  She found ways to still enjoy life and bless the lives of others, despite her limitations from the stroke.  She loved people, and she loved the Lord, and she let everyone she met know it.  And when she was determined to accomplish something, heaven help the man who tried to stand in her way!  She remained a strong and independent spirit right up to the end.

I miss my grandmother very much, but love the memories and legacy she has left with me.  Her determination to still love life and live it the way she wanted to live it despite her handicap are a fantastic reminder to me to enjoy this life I've been given, even when CF has me down in the dumps.  Despite a life-shortening chronic illness that I know will never go away, I can still choose to find joy in each day, love those around me, and strive to make the most of every day I'm given.  Also, once I make up my mind to do something - just try and stop me. 😉

We love and miss you, Oma.  Thank you for being such an amazing and inspirational example of a strong, independent, determined, and godly woman to all your daughters and granddaughters.




Friday, May 26, 2017

CF Awareness Month Day 26 - In Memoriam

For today's post, I thought I'd share a post I wrote back in spring 2015 about the passing of my friend, but never posted.  Even though we weren't particularly close at the time of his passing, he holds a special place in my heart because he was one of my first friends in this life.  His death was a very difficult one for me to process because he was the first person with CF I personally knew to have died from the disease.  Thankfully, two years later, he's still the only friend I've lost to cystic fibrosis, though I have watched from afar online as two other CF warriors documented their fight on social media for years until CF finally claimed their lives, too.  I'm so grateful I've not had to see more friends pass away from this disease, but that doesn't make these passings any easier.

And so, without further ado, my unpublished tribute to James from April 2015.

In Memoriam -

By some miracle, I made it to almost 29 before losing a friend to cystic fibrosis.  James was one of the first friends I ever made in life.  Our moms met at our local CF clinic when we were about 2 and 3 years old, and they became close friends and avid advocates for the CF patients and CF parents at that clinic.  And while our moms met on a regular basis and fought to save the world (or at least to give us a fighting chance at a successful, healthy, normal life), James and I got to play.  We got to be two normal kids. ("Big Bird is your favorite?  Yeah, me too." "You like sliding down stair banisters?  Let's race!" "Oh, you have to lean down on your mom's lap while she beats on your back and chest several times a day?  No biggie - I do, too."  "You have to take little pink pills when you eat?  Cool.  Me too.") I remember on more than one occasion discussing with my mom how I planned to marry James so that we could remind each other to take our enzymes.  Really, it only seemed logical.

That memory makes me chuckle now, but I think beneath its humorous casing is a deeper insight into the bond that forms between people with CF, even if those people are only children.  As an adult, I sometimes struggle to relate to other people my age, because it feels like so much of my life is just so different because of how it is impacted by CF (that's a post for another time, though).  And even back then, within my innocent, limited, child's perspective on the world, I recognized that there was something that separated me from other kids - namely, taking medicine every time I ate.  It was kind of a frustrating chore, sometimes, for a five year old.  But you know who else understood?  James.  Even from a young age, my little mind and heart saw the distinctions that made us separate from others but alike to one another, and a bond was formed.

And I think that is a bond that never really dies.  James and I drifted apart as we got older, as both our lives and our mothers' lives got busier.  Then, of course, eventually came all the strict cross-infection protocols, which meant CF patients really weren't supposed to be anywhere around each other unless absolutely necessary.  This meant that aside from our early childhood friendship, James and I had little-to-no contact during most of elementary, middle, and high school.  Thanks to Facebook, however, we were able to reconnect over the electronic interwebs during college.  At a time before CF blogging had really taken off, and also at a time when I was trying desperately to compartmentalize my CF and keep it contained to a tiny corner of my life (which meant almost never discussing it and certainly not knowing any friends with it!), reconnecting with James on Facebook was fascinating for me - what an encouragement to see this old friend who was also still living and thriving despite cystic fibrosis.  As a senior in college at the time, the role of CF in my life had grown a lot more sinister and complicated from the days when all I had to worry about was taking enzymes when I ate.

But I still was not alone.  James understood.  James was making it in life.  James was defying the statistics.  And therefore, I could, too.

For the next six years, our friendship was limited to occasional Facebook messages and comments.  But then, in the summer of 2014, while I was in the hospital during one of the most frustrating health periods of my life up to that time, I noticed a familiar-looking name on the door of the room next to mine.  After doing an about-face in the hallway, I peeked into the room to see if it was really him.  And sure enough, sitting on the hospital bed, doing his vest like a good little CF patient, was James (looking about 20 years older than the last time I'd seen him...).

During this difficult spell of health, both physically and emotionally, my heart was uplifted to see that I had a friend right next door, fighting the same good fight.  All those tears and frustration, wondering why this disease had to be my burden in life?  James, my CF buddy, understood in a way no one else really could.  Those frustrations I felt when a nurse or RT didn't do their job right in a way that could seriously damage my already fragile health?  James understood.  That determination I felt to go to the hospital gym to exercise every day, even when I really didn't want to and even if it was only walking on the treadmill for 10 minutes at 2 miles an hour because every little bit of strength counts?  James understood.

Looking back, I'm so grateful that God orchestrated that chance for James and I to cross paths and be friends face-to-face again (granted, there were usually masks and a 10-foot infection buffer zone involved, but hey, it still counts).  When, after two and a half weeks, I left the hospital before he did, we made some joke about how it was good to see each other again, and how we should do it again "same time, same place, next year?"  Sadly, even if we wanted to follow through on that slightly macabre joke, we never got the chance.

James passed away on March 20, 2015, due to complications from his cystic fibrosis.  After a dramatic downturn of health in November, he'd fought back from the brink of death several times.  For about two months, he was even wide awake and able to walk, eat, and interact with the world - so much so that most of us following his story were convinced he had made it back and was on the long but sure road to recovery.  It came as a heartbreaking surprise, then, when his health once again deteriorated quickly due to the recurrence of a nasty infection in his already severely damaged lungs. He passed away peacefully and painlessly a few days later.

I am so grateful to have such wonderful support system in my life - my family and my husband, in particular, are the most amazing cheerleaders I could have prayed for.  But there is a special kind of encouragement that comes from friendships with other CF patients who are fighting your same battles with the same fears and same desperate hope that you yourself are fighting with - these friendships form a special kind of bond that is always present, despite the lack of physical proximity or even large gaps of time in communication.

James, I am so grateful for the bond of friendship we shared, both as "first friends" and as fellow CF warriors.  You will be missed.  Breathe easy, brother.

Thursday, May 25, 2017

CF Awareness Month Day 25 - CFF and Our Anniversary!


I've mentioned the CF Foundation in a few of my past posts.  They are a huge driving force in the hunt for a cure for cystic fibrosis, and an excellent resource for patients and their families.  They, along with organizations like CFRI (Cystic Fibrosis Research Inc.), have poured countless resources in improving the lives of people with cystic fibrosis, and I am only here today because of the treatments and research that have been funded by these organizations.  Check out their websites:

www.cff.org
www.cfri.org

In other news...

Today is our wedding anniversary!!  4 wonderful, silly, love-filled years together. :)  If you want to kill some time, feel free to check out my wedding blog post from back in 2013.

We're back in the hospital this week, so the ambiance is not ideal, but my wonderful hubby has still managed to spoil me.  It started with a beautiful bouquet of yellow roses (our special flower), and a ridiculous assortment of breakfast foods that I love.  Also two awesome pairs of pajamas, and one ridiculous-looking pair that he dared me to wear all day with a straight face (challenge accepted!).  Next came not one, but TWO boba teas, because I'm always sad that one is just never quite enough. :)  I'm pretty sure he's the most amazing man alive, and I'm still so so excited that I get to be married to him.  I love you, boo!

Also, when the nurses and RTs found out it was our anniversary, they went in together and bought us a beautiful ceramic cross and they all signed an anniversary card.  They are so so sweet. 💚  Gift wrap was in short supply, so someone got creative and wrapped it in an isolation gown with waterproof tape, haha. 😂  It was perfect.

 


Wednesday, May 24, 2017

CF Awareness Month Day 24 - Videos

Can I be real for a second?  Thank you.

I have a strong inner-cynic who likes to scoff at things.  At the same time, I'm actually a pretty upbeat and friendly person - I just have a little more "edge" to my humor than most people assume when they meet me.  But I genuinely love people, and I hate gossip and saying unkind things about others - I try hard not to let such things leave my mouth, and I get really annoyed when other people do it around me.

And yet, sometimes I let my inner-cynic take free reign in my thoughts, and laugh at things that try to take themselves seriously when in fact they are incredibly cheesy or ridiculous (in my opinion).  But sometimes the struggling human heart needs something simple, upbeat, and even a little "cheesy" to uplift it.

Take, for instance, the song below.  I've probably heard it on the radio a hundred times over the last few years, and every time brushed it off as a "fluffy" or "cheesy" song that lacks real depth (enter high-brow scoffing).  I probably ranked it in my mind about even with those motivational posters people used to put around the workplace.*



But that didn't stop me from bawling like a baby when my favorite nurse came into my hospital room yesterday and played it for me on her phone because she'd seen the music video and said it made her think of me.  Followed by writing "OVERCOMER!" in capital letters on my dry erase board before leaving my room. Haha! 💚 her.

Since then, I've watched it at least 5 times and cried every time.  It's catchy, and yes, a little cheesy, but there is truth in the words, too, and sometimes a catchy, uplifting, inspirational tune is just the kind of cheer your heart needs when you're not feeling well.  I hope you give it a listen/watch, throw away your inhibitions, and start to sing along with me! :)



*My inner-cynic apologizes if you still have this poster hanging on your office wall.


Tuesday, May 23, 2017

CF Awareness Month Day 23 - Photos

For today, I scrolled  through my photos app to see what everyday-life pics came up that are CF-related. Here's the photo dump from that: :)




Here is a pic of most of the meds I take, gathered together before I pack them in my suitcase.  This is about 2 weeks worth of meds.


And here is what it looks like when I pack 3 1/2 weeks worth of meds into my suitcase, haha.  The only things in the suitcase at this point were medicines and medical equipment.  Doesn't leave a whole lotta room for clothes and shoes, but you do what you gotta do. :)



These are pics from early on in a clinical trial I'm part of.  The picture on the left is what a sweat test looks like - I found this super interesting, because I hadn't had a sweat test since I was a toddler, so I had no idea what it was actually like.  The pic on the right is the trendy "grandpa watch" I had to wear for six months to keep up with...actually, I'm still not exactly sure what it was measuring/keeping up with for those six months.  Hopefully there wasn't a camera or something in it... 🤔



I looked over from the chair I was sitting in the other day and saw this on the armrest of the couch and couldn't help but laugh.  This is the kind of awkward and suspicious scene that emerges when you have a medical condition and are also an naturally untidy person, haha.  All that was missing was a lighter.  😂


HOSPITAL PICS: 

And no CF photo dump would be complete without a couple hospital pics.  When in the hospital, you've gotta find things that make you laugh and smile to stay sane. 


My room last November during the battle of the pneumothorax.  I 💚 Christmas lights... and also the double window!  That was special and a rare commodity around here.


An awkward pair of disposable hospital underwear a patient care technician brought me once out of the blue and with no explanation as to why.  Still not sure what that was about...haha!


Lime jello is one of my absolute favorite things about being in the hospital - but it has to be full-sugar!!  None of that "diet" crap!


And when the hospital food staff wants to torture me by only ever sending the "sugar free" version, my friends and family step up to the plate and bring me some that's homemade. :)


A yummy Valentine's Day hospital dinner from a few years ago...


... with wine.  Shhhh!

Monday, May 22, 2017

CF Awareness Month Day 22 - CF Facts

This topic kind of goes along with yesterday's "What is CF?" topic.  If you want to know more about what CF is and facts that go along with it, check out www.cff.org.

Here is one random, interesting "fact" about CF that I'll leave you with, though:

One of the theories about where Cystic Fibrosis comes from is that the CF gene mutated into what it is now as a defense against cholera and cholera-like diseases.  At its base, CF is caused by a faulty gene called the CFTR gene.  A healthy CFTR gene is supposed to produce a protein that controls the movement of salt and water in and out of our cells.  CF patients have a faulty CFTR gene, meaning the protein does not accommodate the movement of salt and water out of our cells like it should, which results in the thick, sticky mucus that clogs up our bodies.  However, it is hypothesized that the defective CFTR gene would actually prevent death in the case of cholera (a disease that kills its victims by causing extreme dehydration through an unrelenting loss of fluids via diarrhea, vomiting, etc.) The theory is that the faulty molecular pathway that prevents the normal exchange of salt and water in cystic fibrosis cells would also block the exchange of the cholera toxin which causes diarrhea and extreme dehydration.

Some studies were conducted in the early nineties where mice were given one, two, or zero copies of the faulty CFTR gene in cystic fibrosis, and then all mice were injected with cholera toxin.  The results showed that mice with two healthy CFTR genes all died from cholera-induced diarrhea.  The mice with one faulty CFTR gene (meaning they were "carriers" of the CF mutation) suffered from diarrhea only half as bad as the mice with normal genes.  And the mice with two copies of the faulty CFTR gene (meaning they "had" cystic fibrosis) did not suffer cholera symptoms at all.

So, there's that theory.  I can't find any recent research on the topic, but here's an old article that's interesting:  http://www.nytimes.com/1994/10/07/us/clue-to-why-cystic-fibrosis-has-survived.html

So there ya go - the one leg-up we have on society as a whole is that if there's another cholera outbreak, we might just survive!  Hey, I'll take it.  😀

Sunday, May 21, 2017

CF Awareness Month Day 21 - What is CF?

It strikes me as a little silly that this topic would come up 3/4 of the way through the month! Haha.  Hopefully if you're reading these daily posts, by now you have some kind of idea what CF is.  But just in case...

CF stands for cystic fibrosis.  It is a recessive genetic disease that primarily affects the lungs and digestive system, though other systems are often affected as well.  The main problem with CF has to do with a defective protein in our cells that doesn't function properly and results in the production of thick, sticky mucus throughout our bodies.  This mucus causes various problems, but the most prominent is that bacteria get stuck in it, and the mucus itself doesn't clear out like it's supposed to because it is so thick and sticky.  Therefore, the bacteria thrive in the mucus that is more or less trapped in our bodies, which causes multiple issues.  Typically, this infectious bacteria is found in our lungs and sinuses, making it difficult to breathe.  Eventually, the recurring infections cause scarring in our lungs, making it even harder to breathe, and resulting in the loss of lung function.  The thick mucus also oftentimes blocks the production of enzymes in our pancreas that are necessary for digesting and absorbing fat.  This means that without pancreatic enzyme supplements, many CF patients are unable to properly digest fat, which leads to malabsorption and nutritional deficiencies.  CF and its required care is often very strenuous on the body, and as people with CF age, other health issues can arise from their CF complications, such as CF-Related-Diabetes and CF-Related-Arthritis.

Most CF patients must do breathing treatments and some form of airway clearance to keep their lungs as clear as possible from that sticky mucus.  Most patients also take some kind of pancreatic enzyme supplementation to help digest their food.  From time to time, most patients will also need course of antibiotics to treat lung infections.

There are many new treatments available these days to help fight the effects of CF, and even some new drugs that are meant to address the root problem are correct the defective protein that causes the thick mucus in the first place.  It's an exciting time for CF Research.

Saturday, May 20, 2017

CF Awareness Month Day 20 - Denial

For my free topic day, I thought I'd write about something that's been on my heart a lot recently as I go through a difficult season of health.

My whole life, I've fought hard to be someone who accomplishes something great in life.  I was a smart kid, and I did well in school.  I was motivated to achieve goals, and I set my aspirations pretty high.  College was when I went through a period of realization that CF could and likely would get in the way of achieving the impactful life I yearned for.  I cycled through feelings of anger, grief, and fear, but always ended up firmly planted in determination.  Determination that I would live a normal life no matter what my odds were; determination that I would live way past that average life expectancy if I just ignored it and pretended it didn't exist.

The problem with this determination that drove me so hard is that oftentimes it was actually just a romanticized version of denial.

Personally, I'm not going to sit here and preach that a sense of denial with an unpredictable disease like CF is a bad thing.  In my case, a healthy dose of not wanting to acknowledge statistics and give them a hold over me allowed me to reach higher than I probably would have otherwise.  Knowing I had some tenuous early expiration date out there was always in the back of my mind, but I didn't let it stop me from striving for things I wanted to achieve - in fact, it made me more determined to accomplish things, and in my mind my little accomplishments were all the more impressive because of what having CF could have meant in terms of never finishing those goals.

I'm glad that I didn't let CF slow me down and stop me from achieving big goals I had for myself.  But somewhere along the way, the drive of denial got stronger and stronger until that was all that was driving me instead of any realistic determination.

About 1-2 years ago, I started feeling an intuition that CF life was about to catch up with me, and I needed to slow it down.  I didn't heed the feeling.  It made me angry, and I was "determined" NOT to give up on the future I had planned, in the order I had planned it - get a job, become a good lawyer, work for 1-2 years, then start a family.  I would NOT let CF interfere with this perfect plan I had.

Even as that first year went by and I could feel my health declining, I refused to admit it.  I just knew all I needed was more rest, and to get better at my job so that I wasn't stressed as often, then things could continue as I'd planned.  Then one illness succeeded another, and another, and another, but still I wasn't ready to completely give up my career plans that I'd worked so hard for.

And then it all came tumbling down in the span of 6 months.  And I finally had to acknowledge my body isn't like "normal" people's bodies, and my life necessarily cannot be like theirs either.  It was long past time to leave my job and focus on my health.

I wish I'd heeded my body's warnings and intuitions sooner.  But my denial about what this disease could do to me, and how little control I truly had over it has led me to a current place of heartache, regret, and questioning that I think could have been avoided.

So my message is this:  Set your goals high, CF fighters!  Don't let this disease define your hopes and dreams, and work hard to achieve what you've set your mind to achieve.  BUT...

BUT...

Listen to your body and your spirit.  It's ok to put your health in front of your aspirations.  When the time comes to decide between letting go of a dream or your health, it honestly might be the hardest decision your ever wrestle with.  But don't let pride and denial get in the way of taking care of yourself.  Don't push so far that you don't know if you'll be able to get back to a good place when you finally decide to try.  It's ok to let your health be a primary focus in your life.  It doesn't make you less of a person.  Don't be afraid to find your healthy balance between truly living life and making sure you have plenty of life to live.

Friday, May 19, 2017

CF Awareness Month Day 19 - Smoking 😡


Oh man.  This topic really gets my gizzard every time.  I just don't understand how, in this day and age, with alllllll the scientific research that has shown how absolutely terrible it is for you to smoke, and with allllllll the campaigns to make sure the public is educated on just how terrible smoking is for you, basically bombarding us with the information from the time we're in kindergarten - how are there still people smoking??  And even crazier is that it's still happening at all levels of society, including extremely intelligent and educated groups of people - even some doctors and respiratory therapists that I know!  Wha??

The first time I remember ever truly getting angry about smoking was when I was a young teenager and I realized my cousin had picked up the habit.  I was so angry that he was doing that to himself, and also angry at how unfair it was - I have to work SO HARD to keep my lungs from literally killing me every day, and I've never purposefully done a single thing to them in my entire life that was harmful, yet I struggle, and even back then I knew it would be a struggle for my entire life.  I thought it was extremely awful and selfish and unfair of him to choose to ruin his beautiful, perfect set of lungs for absolutely nothing.  His decision to smoke also felt like a personal stab, like he didn't care enough about me to let my lung disease impact him enough to be adverse to smoking.  Please please please keep this in mind if you're a smoker and someone close to you has lung health problems!  By smoking, you are not only physically harming this other person with your second hand smoke, you very likely are also causing emotional pain.

The sentiments still hold true today for pretty much any person I see smoking, anywhere.  Just don't do it, guys.  I know addictions are incredibly difficult to kick, but you can do it!  It's worth it!

And it's not just worth it for you - do it for the rest of the world and those who are closest to you!  Second-hand smoke is a terrible, real thing, especially for someone with a genetic lung disease.  And every time we are forced to breathe in your smoke as we sit at a stoplight, or walk through your smoke at the entrance to a building as you puff away in front of the "no smoking" signs, or get stuck in a cloud of your stagnant smoke while trying to enjoy a meal at a restaurant, you're not just harming yourself, you're harming us, too.

I've had a handful of friends/family and a large number of co-workers over the years who smoke, and I 100% realize that smoking does not making someone a bad person.  All kinds of things in life can lead a person to pick up a smoking habit, and I sympathize with the difficulty of trying to quit.  However, like any person close to someone with a harmful addiction, it's impossible not feel like they are being incredibly selfish and stupid by keeping up a habit that is harmful to both them and those around them.

Thursday, May 18, 2017

CF Awareness Month Day 18 - Hygiene & CF


I've never been a true germaphobe.  When I was growing up, my mom was often pointing out and reminding me where germs would be and why they were dangerous for me, and I kind of hated it.  I just wanted to live life like everyone else without being overly paranoid about what might be lurking in the public shower, or the toys in the doctor's office, or what bacteria might be in that stagnant lake water, or why it was a bad idea to share a drink with my friend.

In the last few years, though, an inner-germaphobe has been developing a stronger voice.  I'm not quite a full-blown germaphobe yet, but I am SUPER aware of potential germ sources now and avoid them as much as humanly possible without completely shutting myself into a bubble.  Nowadays, pretty much every time I catch a cold I end up either in the hospital or IVs, so I'm terrified of getting sick.  This means avoiding or leaving social situations where someone is or has recently been sick - this sucks, because I want to be able to visit with friends (and their germy kids), but it's just not worth it most of the time.  It's also awkward because normal people go out in public all the time when they're sick and don't think anything of it, and sometimes I can tell they're a bit offended when we cut a visit short because I don't want to be around their germs - but oh well!  I've also become very aware of touching things in public, and I wash my hands or use hand sanitizer ALL THE TIME.  This sense is highlighted when traveling or at the doctor's office.  Also, I've bought a fancy VOGmask to wear when I travel.  I hate wearing masks, but it's worth it if it filters out those nasty airborne germs in the airplane that will ruin my trip!

This fear of germs has never really bled into other area of my life, though - I can see how having a disease where you have to be this careful and keep up with so many things can turn a person into an excessive organizer who is obsessed with order, but that's just never been me.  In fact, I have to really fight my natural tendencies to be super messy and disorganized.  Oh well - one improvement at a time. 😊

Wednesday, May 17, 2017

CF Awareness Month Day 17 - My Savior

Taking this topic in its most literal sense, I gratefully proclaim that my ultimate savior is and always been Jesus Christ.  He has redeemed my broken soul, and provides comfort and assurance when all else in this world causes pain and makes no sense.   My life has some kind of purpose in his ultimate plan to reconcile all of creation to himself, and the promise that all things somehow work together for the good of those who love the Lord is a promise that gets me through the darkest times in life, which includes the moments I want to weep or scream in frustration about this disease.  Stating that I don't understand how it all works together is the understatement of the century - but through it all, the steadfast love of the Lord never ceases, his mercies are new every morning, and He is faithful.

When interpreting the topic of "my savior" in a different way, though, the people that come to my mind are my parents and my husband.

My parents have always been amazing with me, especially when it comes to helping me deal with CF.  My mom, especially, is able to sympathize with me that my life has a lot of difficult challenges in it, and she never fails to encourage me when I am feeling low - however, she also is great about helping me keep the perspective that ALL people have challenges in their lives, that it's part of being human, and she reminds me that life can still be lived to the fullest no matter what our challenges are.

My sweet husband is my other "human savior."  Before I met him, I did not cope well with acknowledging my disease, especially to others.  I tried hard to hide it as much as possible.  Then he came along and loved me exactly the way I was, and gave me courage to acknowledge that CF is a part of my life and I should embrace it instead of ignoring and hiding it.  By learning to "embrace" the disease, I eventually was able to face it head-on, take stock of what I needed to do to beat it as long as I could, and get serious about being proactive and compliant with my treatments so that I could have as many years with my amazing hubby as possible.

Tuesday, May 16, 2017

CF Awareness Month Day 16 - !*#?$ ups

Thankfully, I rarely experience mistakes or have complaints with my CF team.  A hospital stay always has a few little issues, (like an RT I had a few years ago who would rinse out nebulizers after each use with tap water in the bathroom sink!?!), but not usually anything major.  The biggest  *&#$!? ups (or, as I would call them, #facepalms), I encounter with CF usually tend to come from dealing with insurance companies and pharmacies.

Why??  Why is a medicine I've been receiving for years with no problem, and that I in fact just ordered three months ago during THIS CALENDAR YEAR suddenly not written correctly, or no longer covered, or requires some new prior authorization??

WHY would you agree to cover inhaled TOBI and inhaled Cayston, but not inhaled colistin, which costs 1/5 of the price and is the only medicine that works for me to keep me and you (insurance company) out of another astronomical hospital bill??

WHY WHY WHY would you (insurance company) issue 16 individual checks, totaling thousands of dollars, directly to me to then turn around and pay the home health pharmacy, instead of you paying home health directly, but then never tell that to me or EVEN MAIL THEM TO ME??

WHYYYY home health pharmacy are you still sending me "past due" invoices each month for services you provided over a year ago that I've already paid for (and discussed with you many times), and why are the amounts always wildly different from invoice to invoice when absolutely nothing has changed from the last one you sent???

As most CF patients and caregivers (or anyone touched by chronic illness, I imagine) will likely tell you, then amount of time you spend on the phone dealing with insurance and pharmacy issues can honestly feel like a part-time job.  I cringe deeply every time I get a "wrong" bill in the mail from someone, or a "claim denial" letter, because I know the headache and amount of phone time waiting ahead to get it taken care of.  It's extremely frustrating that the system appears to be so inefficient.

But, I feel like I would be a huge ingrate if I didn't also state that I am so very grateful for insurance coverage and for the ability to get the medications and services I need....even if they cause a huge headache half the time!!  Really, though, sometimes I sit back and realize just how much it takes to keep this body of mine going, and I'm so grateful for a world where what I need is eventually accessible in some way, shape, or form.

Monday, May 15, 2017

CF Awareness Month Day 15 - Oops!


There are a lot of actions that become rote behavior over the years of caring for your CF day in and day out.  Sometimes this is great because I can just put my mind on "cruise control" and get through a lot of my daily treatment requirements without expending much mental energy, but every once in a while it can throw a funny wrench into things because I'm not paying attention.

My biggest repetitive "oops!" moments probably go along with what I call my enzymes-autopilot-mode.   Sometimes, (often at the end of a long day), I'll suddenly think of something I need to go do in the kitchen, and then I let my mind wander as I walk and apparently my "autopilot" kicks in - because the next thing I realize, I'm standing in the kitchen, and instead of completing my initial task of taking a tylenol, or doing my inhalers, or unloading the dishwasher (I wish I were kidding...), I'm holding a glass of water and mindlessly swallowing enzymes!   Haha!  Thankfully a couple of superfluous enzymes here and there isn't something you really have to worry about, so once I realize what's going on I just laugh at myself...then sit there way too long trying to remember why I came into the kitchen in the first place.  😂

Sunday, May 14, 2017

CF Awareness Month Day 14 - Kid Talk


I don't have kids of my own to comment on my CF, and I don't remember any of my own insightful comments on the disease when I was a child (though there were many, undoubtedly).  I do have lots of little cousins and two nieces who ask questions about my health along the way.  Usually it's something along the lines of "Are you sick?" whenever I cough in front of them.  Usually I just say "Kind of, but don't worry, you can't catch it."  My toddler niece likes to join me when she sees me doing my treatments, though, which is pretty cute.  She's tried on my AffloVest before, and sometimes sits with me if I'm doing my more intense Hill Rom vest, and she's been known to find random (clean!) nebulizers sitting around and stick them in her mouth.  :)  I think it's pretty cute, and the fact that the treatments don't really phase her and she actually wants to mimic me when I'm doing them makes me love her even a little bit more.

Saturday, May 13, 2017

CF Awareness Month Day 13 - Big Words



There are lots of big, scary words in CF, but I think the one that has stuck out the most for me in the last few years is "pan-resistant".  It's the name they give to bacteria when it is no longer susceptible to safe levels of antibiotics in the blood.  It first started getting tossed around in my little world about 3 years ago when I developed two mucoid strains of pseudomonas that were extra tricky to treat.  Since then, it's been a big, fearful word in the back of my mind, because I'm very concerned about the day coming when no antibiotics work against a raging lung infection.  For now, my go-to IV antibiotics are definitely not as strong as they once were, so it's hard to say whether the bacteria has already morphed into something pan-resistant, or if it's only getting closer and closer.  Big scary word, big scary idea, but the world itself can be big and scary, and you just have to take things one day at a time.

Friday, May 12, 2017

CF Awareness Month Day 12 - Cracking Point


*Warning:  I fully acknowledge the following post is depressing.  This one is not at all inspiring, but I guess it is a good glimpse into the lower points of dealing with progressive CF.  Plus it makes me feel better to word vomit sometimes.  😏

I'm not completely sure what this post is supposed to be about, but I'm guessing it has something to do with reaching a point with managing this disease that basically "breaks" you.

Dealing with chronic illness is never easy, whether you are the patient or the care-giver.  It's even harder when it's a progressive illness and you're repeatedly reaching new markers that signify things are getting worse.

I thought I'd reached "cracking point" in the past, and I guess for those particular points in time I really had.  Tearful breakdowns, fears, and frustrations that I felt bad and life was hard.  Never-ending treatments, for as long as I could see into my future, with no guarantee they would actually keep me healthy.  I feel like those were nothing compared to the progressive "cracking points" I've had in the last 6 months or so, though. Honestly, this past year has been exceedingly difficult; I feel like I reach one justifiable cracking point, pull myself up again, then a few weeks/months later reach a new, lower cracking point, and the cycle continues over and over again, always leaving me a little lower and little weaker than I was before.

First it was sorta kinda trying to get pregnant and failing repeatedly while all around me friends were popping out babies and positive pregnancy tests like it was the easiest, most natural thing in the world.  Pregnancy was not happening for us, though, mostly due to some hormone issues I recognized, but also because I kept getting overworked and sick and put on IV antibiotics.  That was the start of the downfall to the most recent "cracking points."  Then came the surprise pneumothorax, which was extremely stressful and painful, and for a while we weren't sure if it was going to fix itself.  Again, I'll provide more information about this event in another post, but through my haze of morphine memories, I remember one afternoon everything coming to a head and bawling my eyes out to my nurse and nurse practitioner because I just "couldn't see a silver lining here" and that it felt like it was never going to get better, to which my sweet nurse at the time randomly burst out into a worship song to help soothe my fears.  That was a cracking point, but eventually the lung did heal up and I did go home.  Then I went back to work and caught a cold a month later, which sent me back onto IVs and the true realization I really just couldn't keep working anymore and I would have to quit my job because of what CF had done and was doing to my body.  I wept, I got angry, I turned bitter in some moments.  Turning in my resignation to a job I wanted to stay at but knew I couldn't because of how low I'd been knocked with my health was a cracking point.  But I pulled myself up by the bootstraps again, and tried to find the bright side.  Yes, I was leaving a career I loved, but now I would have time to enjoy being at home, get as healthy as can be, and hopefully figure out and truly pursue this "starting a family" thing.

And then two months later came another cold.  And another hospital admission.  And talk of getting a port because they couldn't get a PICC in this time.  And PFT numbers that seem to have plateaued at the lowest and scariest place they've ever been, and a flare-up that doesn't seem to be responding to end-of-the-line antibiotics or high doses of steroids, and the feeling that if this is as good as it gets, I really have nothing more to look forward to or work toward in the coming years except waiting to get sick enough to need a lung transplant.  And feeling negative and bitter anytime someone tries to say something like "you make me proud" or "you're inspiring", or they try to cheer me up by sending me a picture of their cute baby.  And the realization that I am terrible at this progressive-illness thing and wishing I had way more grace about accepting things as they are, but I don't.

And that's where I find myself since yesterday afternoon when those PFTs hadn't budged a bit and I was still coughing up all kinds of junk after over 10 days in the hospital and on lots of medicines, and what feels like all my remaining hopes and dreams being kicked to the side, and worst fears beginning to come true - the lowest cracking point ever.  I continue to try to grasp onto joy and hope, but those seem to be in short supply today.

So, there you have it.  My most recent "cracking point."  They happen to us all.  The important thing is finding a way to build back up again, even with new cracks.

Thursday, May 11, 2017

CF Awareness Month Day 11 - "P" Words


Ahhhh, the "P" words!  There really are so many with lung disease!  Let's see what I can come up with here...I'll start with the suggested words in the picture:

Pseudomonas:  One of the most common bacterias that grow in the lungs of CF patients and cause problems.  Personally, I grow about 4 different strains of this bad boy, 2 of which are mucoid strains and are tricky to treat.

Prolapse:  Thankfully, I've never experienced rectal prolapse.  I hear it's painful, though.  I think this can be caused when your enzymes don't work right (or you don't take them!) for a long time, and the stress all that undigested fat puts on your intestines and rectum can cause a prolapse.  I could be completely wrong about that though!

Pancreatitis:  Again, thankfully I've never had pancreatitis (that I know of!).  I do randomly get some pains in the side of my abdomen, but I don't think they've ever risen to the point where it could be pancreatitis causing them.  I believe that, like a prolapse, pancreatitis is very painful.  Pancreatitis is not super unusual in CF patients due to the fact that most CF mutations put a lot of strain on our pancreas anyway.

*I'm not sure what pegs and poopas are, so I'll be skipping those, haha.  I think this "31 day challenge" must have originated in an English-speaking country way cooler than the U.S. 😂  I'm guessing "pegs" are maybe a reference to feeding tubes, but I'm utterly at a loss for "poopas"!*

Ports and PICCs:  I'm going to group these together because they're kind of different versions of the same thing.  A PICC line is a "peripherally inserted central catheter", usually put in a CF patient's arm when they are needing a course of IV antibiotics.  A PICC line is a kind of IV, but it lasts much longer than a peripheral IV.  PICCs can last months and months, whereas peripheral IVs usually only last a few days before they need to be changed.  PICCs are advantageous because they allow the CF patient to do a full course of IVs (which usually lasts at least 10 days, but often for several weeks) without constantly having to get a new IV put in.  PICCs are also great because you can easily draw blood from them for labs, and they're easier to use and maintain at home than a normal IV.  PICCs are usually inserted on the inside of a patient's upper arm, and the catheter runs through a large vein and ends just above the heart.  I've had many PICCS in my adult life - in recent years, I usually keep them in for at least 6 - 8 weeks.  They're a bit annoying to maintain, but for the most part don't really get in the way.

Eventually, a patient's veins get worn out and scarred from too many PICC lines, and a CF patient might need to have a Port put in.  Another reason a CF patient might go ahead and get a port even if their veins aren't worn out is if they are on IVs often (several times a year) and don't want to go through the hassle of getting a PICC line put in each time.  A port is a more permanent IV access.  A catheter is surgically inserted underneath the skin with a "button" that sticks out a bit under the skin where the catheter can be accessed with a port needle.  I don't have a port yet, but I know eventually I will need one.  The veins in my little arms are starting to get worn out and PICCs are getting harder to place these days.

Physio:  Again, a term I'm not completely familiar with, but I think this is talking about either chest percussion therapy (CPT - such as pounding on a patient's chest and back to bring up mucus, or using a therapy Vest which inflates and shakes the mucus loose in your chest), or it's talking about exercise - both of which are very important!  Because CF patients have thick mucus in our lungs all the time, it's important to take daily steps to clear that gunk out so it doesn't build up and cause infections.  Personally, I use a therapy Vest twice a day.  I also should be exercising to get that junk up, but haven't been very good about that for the last few months.  Hopefully that's about to change though!

Pancreatic Enzymes:  Many CF patients have to take supplemental pancreatic enzymes when we eat to help us absorb fat and fat-soluble vitamins and nutrients because the mucus in our body plugs up our pancreas, resulting in a drastically reduced production of pancreatic enzymes needed to break down and digest that fat.  Most of us, myself included, take pancreatic enzymes every time we eat or drink something with fat.  Otherwise we get a really bad tummyache!

My own "P" Words

Pneumothorax:  A pneumothorax is when air somehow leaks from the lungs and get trapped in the chest cavity between the lung and the chest wall, creating pressure on the lung and causing it to collapse, either in part or completely.  I experienced a pneumothorax in November 2016 - it caused a great deal of pain in my shoulder region that I couldn't explain, plus I could notice air bubbles moving around in my ribcage whenever I bent over (!!!).  Correction for a pneumothorax depends on how severe the collapse is - if it is small, bed rest and supplemental oxygen can fix it after a few days.  More extreme collapses require a chest tube to drain the trapped air from the cavity, and those tubes have a large range in sizes, again depending on how large the collapse is.  If chest tubes and rest do not fix the collapse, a surgery called pleurodesis (another "p" word!) may be required, which is where a thoracic surgeon goes in and adheres the the lung to the chest wall to keep it inflated, usually using some kind of talc powder.

Pleurisy:  Pleurisy is another lovely lung/chest wall issue that pops up on occasion with CF.  Basically, it's where the lining of the lung becomes inflamed for some reason, resulting in pain when you breathe and your lung rubs against the inflamed chest wall.  Since breathing is kinda, you know, essential, there's not a whole lot you can do about it.  I've never had an official diagnosis of pleurisy, but now that I know what it is I'm pretty sure I've had at least two or three bouts of it before.  Luckily for me it usually only lasts for a day or two before it clears up on its own, but I know that some people have to live with it for several weeks sometimes.

Pan-resistant Bacteria:  This is the especially yucky kind of bacteria that are not susceptible to antibiotics anymore, which makes treatment for exacerbations much harder and longer.  This kind of bacteria can be picked up by CF patients from various sources, but usually pan-resistance develops over time as antibiotics are used often to treat infections and the bacteria gets "smart" and develops a resistance to antibiotics.

Prednisone:  A lovely little corticosteroid that CF patients either love or hate with a passion!  Personally, I love going on prednisone.  It gives me a crazy amount of energy and I breathe way better, all of which greatly uplifts my mood.  It can have some not-so-great side-effects on some people, too, including mood swings and something called "moon face", which is basically where your face retains a lot of water.  It can also raise your blood sugars while you're on it and lower your bone density if you're on it for a long period of time.  I used to get bad mood swings when I went on it, but fortunately I haven't had many of the bad side-effects for a few years now, so I just get excited about the energy and mood boost when the doctor suggests I do a course.

Pulmonologists:  A lung doctor!  Most CF patients will see many MANY of these doctors throughout our lives! :)  CF centers have pulmonologists who specialize in cystic fibrosis treatment, and I am so very grateful to each and every one of them who chooses to pursue this area of medicine!

PFTs:  PFTs stand for "pulmonary function tests."  Basically, it is a way to measure how well a patient's lungs are working, and a good gauge for when it's time to step up the treatment regimen.

Wednesday, May 10, 2017

CF Awareness Month Day 10 - Pros & Cons


I'll be honest - this one's going to be a little tough.  I'm currently sitting around in a hospital bed, where I've been for the past week, and it's proved rather difficult coming up with any true "pros" to having CF.  I don't want to be here, and if it wasn't for CF, I wouldn't be in here, stressing about my health and the future.  So, suffice it to say, lots of "cons" are coming to mind, but I'm coming up with a serious lack of inspiring "pros" to share with you, haha.

To go along with yesterday's post about big milestones and accomplishments in my life, I guess one of the pros of having CF is that it truly influences how I view life and how I want to spend my time.  So long as I'm feeling well, I'm almost always up for an adventure.  And I'd almost always rather spend money on making memories than acquiring stuff.  There is lots of life I want to squeeze into whatever time I have on this planet, and having CF gives me a heightened sense of awareness that life in finite, especially life with the energy and health to pursue things that require physical strength and activity.  It's taught me to truly "seize the day", and seek out sweet and exciting memories as often as possible.  It's also taught me not to dwell on things that really are just not important - life is way too short to dwell on grudges, pithy arguments, or worry about whether my socks match.

On the flip side of that, the biggest con to having CF is time - there just isn't enough time to live the life I truly want.  True, no one truly knows how much time they have on earth, but having a disease like CF gives you a heightened sense of how short life really is.  There's the day-to-day time challenge, like all the time it takes to do my treatments and exercise like I should each day, especially when I was trying to work full-time or go to school.  Also, I don't really ever have time to be in the hospital or to convalesce at home thanks to a CF flare-up.  But then there's the more big-picture struggle with time.  I spent time pursuing a career I felt called to; I spent healthy years pursuing it.  This is something "normal" people do without a second thought.  Now, I'm almost 31, and want desperately to start a family.  For most women, having a short career then starting a family around the age of 30 is a pretty normal course of life - maybe even an "easy" one.  But with my recent downturn of health, I don't know if there will be time for that for me.  Maybe there is.  I really just don't know.  I feel like I am constantly having to do a risk-benefit analysis in my head, picking and choosing what I get to spend my time on in a way "normal" people never have to agonize over.  I don't think I'll be dying anytime soon, but I feel like I'm running out of time to accomplish the things I want in life that require decent health.  And it's hard.    

The other biggest con is the lack of control that comes with a life-threatening chronic illness.  So, so, so many things are out of my control with my health.  I can't control other people going out in public when they're sick with a "small cold," resulting in me getting a "small cold" that lands me in the hospital.  I can't control the weather, which increases my asthma and allergy symptoms, which triggers lots of lung issues.  I can't control when my body falls behind even when I'm doing all my treatments, and I can't control the bacteria strains growing in my lungs morphing into something ugly and pan-resistant.  I really can't control my body, and therefore it is very difficult to control my future.

I suppose the answer to all of this is that I put as much effort as possible into controlling what I can control, like being compliant with my treatments and exercising and eating healthily - and just accept that which I cannot control.  Learning to accept this lack of control and lack of time and being able to move forward with grace and peace is a lifelong project, and a difficult one at that.  Maybe, eventually, I'll learn to master this truth, though, and that will be something more to add to my list of "pros."

Tuesday, May 9, 2017

CF Awareness Month Day 9 - Greatest Milestone & Biggest Challenge


I think my greatest "milestone" at this point in life is taking a look back on my last decade of life and feeling proud at my accomplishments despite having CF.  I've had the opportunity to do a lot of awesome things, some of which are awesome in their own right, and some of which are awesome mostly because of the life expectancy that was slapped on me when I was diagnosed with a life-threatening illness at two years old.

In the last ten years, I've: graduated from the college I always wanted to go to (and worked hard to get into!); studied abroad for a summer; held a good-paying, full-time job (where I met my future husband); traveled to lots of exciting places around the world; married a wonderful, funny, more-supportive-than-I-could-ever-have-hoped-for man; purchased two homes, both of which were/are in a neighborhood I love living in; attended and graduated law school; passed the bar exam; landed my dream job as a lawyer; turned 30; and found waaaaaaaaay too many gray hairs on my head due to my advancing age. 😂

That doesn't mean these last ten years have been all bubbles and daisies - there have been many difficult seasons, tears, disappointments, setbacks, hard work, etc.  But I think that's part of what's made these accomplishments so worthwhile.  I guess the "milestone" I see in all this is just that, up until recent months, I can see a normal progression of life - hard work, seeing that hard work pay off, love, getting older, always moving forward.  That feels impressive when science said I should've been dead at 14.

Now, my biggest challenge lies before me.  My health has fallen far in the last year.  I'm scrambling desperately to get it back up.  I still want to have a family with my sweet husband, more than almost anything.  And I want to be healthy enough to enjoy that family for a long, long time.  But it's going to take a lot of work.  HARD work.  And discipline.  And prayer.  And hope.

The Lord has been my joy and my strength through many hard times before, and I'm so grateful I have so many wonderful blessings to look back on in this last ten years to remind me of His goodness and constancy.  Whatever the next ten years bring as I take on this new biggest challenge of gaining back lost lung function and health, I know that He is with me and it will be an adventure, as always. 😊

Monday, May 8, 2017

CF Awareness Month Day 8 - Non-Compliance


Non-compliance and I have an unfortunate track record.  Growing up, I honestly didn't need breathing treatments very often.   I did them when I had an increased cough, usually when I was sick or the weather was changing, but I did not do them every day.  Somewhere around late elementary school, I did start using steroid inhalers every day, and was pretty good at remembering to do that.  I'm glad I had all those years of not needing to do breathing treatments all the time - but at the same time, I think that made the adjustment even harder when my health started changing and I really did need to do them every day.

I dug my heels in when doctors started wanting me to do multiple breathing treatments every day.  It just took SO MUCH TIME.  So, all through college and my early twenties, when I should have been doing an albuterol treatment, hypersal, pulmozyme, and some kind of inhaled antibiotic every day, along with two Vest treatments, I mostly just stuck to albuterol treatments.  I felt a little guilty not doing the rest, but was proud enough of myself for adapting to do albuterol treatments twice a day that the guilt wasn't enough to make me change my habits.

After my hospitalizations in 2011 and 2012, I got better about sticking to my treatment plan, but still was not great at it, and eventually fell back into my old routine of rarely doing anything more than albuterol treatments and inhalers.  My drive picked up again right before my wedding in 2013, but even that didn't really stick.  It wasn't until after being hospitalized at the end of 2014, a few months before taking the bar, that my compliance routine really whipped into shape.  I was afraid of getting sick again in February, like I had every February for several years at that point, because that was the month I had to take the bar.  So I upped my game, got into a daily routine of getting ALL my treatments in, every morning and every night.  And guys...I did SO WELL.  The routine stuck around for months after the bar exam was over, and that was one of my healthiest years in recent memory.

Then I started back to work full-time, this time in the career I'd always wanted, and though I tried hard to keep up with all my treatments, I eventually slacked off again.  And my health suffered.  And now, I'm still fighting hard to get it back.

We're all human - no one can being compliant 100% of the time for years and years on end as a disease like CF demands.  There are times I/we have to make a choice - like the days when it's late when I get home, and I have to decide,  do I sacrifice sleep so I can get ALL my treatments in tonight?  Or is resting my body more important?   The same question sometimes comes up in the morning - I wake up still exhausted, and have to decide if I should force myself up to do my treatments, or should I let myself get a little extra sleep before starting the day?

As much as parents, doctors, etc., want to force compliance on CF patients, its the patients themselves who have to work out their own personal motivation to stay compliant with treatments.  If you struggle with compliance, know you absolutely aren't alone.  If you're looking for that motivation to establish a compliance routine, I'd encourage you to set aside a block of time - maybe 1-2 months, where you are extremely diligent with all your therapies.  Most likely, you will see and feel a great improvement - and maybe that will be enough of a jumpstart to motivate you to keep at it.  And realize that your motivation levels will likely cycle, and that's ok - just always keep looking for that new thing to keep you motivated to be the healthiest version of yourself that you can be.

Sunday, May 7, 2017

CF Awareness Month Day 7 - School


Since I didn't have to start dealing with hospital admissions until I was in my mid-twenties, CF and school were not a complicated mix for most of my life.  Growing up, I occasionally had to miss school because of routine doctor appointments, and I think my parents were a little more lenient with allowing me to stay home from school when I wasn't feeling well or was coughing a lot, but it was never anything that made me feel different from my other classmates.

In elementary school, I had to leave my enzymes with the school nurse and go visit her during lunch every day to get my pills.  Thankfully it was a small school, so the nurse knew me well and it was never a big deal to go get my pills.  In fact, it made me feel kind of special because it was something I got to do that the other kids didn't, haha.  I actually remember that in elementary school, I had a list of three things in my head that made me feel special and unique from the other kids in my class (in a good way!  I was proud of these differences!):  1) I was an only child; 2) I had no middle name; and 3) I took enzymes.  This is probably a good testament to how my parents raised me to deal with and understand CF.  :)

By the end of elementary school, I just carried my enzymes with me in my purse or backpack, and this continued through high school.  I'll be honest, I wasn't always great about remembering to take them, but my weight did fine so I must have remembered often enough.  The enzyme forgetfulness did often lead to tummy issues while I was at school, though, which could be embarrassing (and painful!).  Slowly, I learned my lesson, though.

My lungs were good enough to not need daily breathing treatments until the end of high school, so breathing treatments, etc., were never a big issue at school or when I'd travel on group trips, etc.

College was a learning curve on taking care of my own health.  On top of having complete freedom/responsibility for the first time in my life, it was unfortunately also the time my lungs started getting worse and needing more attention (aka: I needed to do my breathing treatments and Vest every day).  I did ok keeping up with my oral medications, but I was not great at remembering to take my vitamins.  I also almost never missed an albuterol treatment, but I rarely did my hypersal or pulmozyme, and almost NEVER did my Vest.  My roommate and I got along fine, but we weren't especially close, and while she knew I did breathing treatments every day, I was embarrassed to do the Vest around her because it was so loud and weird.  I wish I could have been braver and more responsible back then, because my lungs definitely took a downward turn toward the end of college.

My last experience with CF and school was when I returned to law school in my mid-twenties.  During law school I had to be admitted to the hospital several times (4 admissions, and 2 at-home-only IV courses, and 3 sinus surgeries).  This was challenging because we were only allowed to miss a certain number of days each semester or we wouldn't get credit for the class.  Really, this just meant I couldn't let myself play hooky very often because I knew I might need those absences for a real reason later. :)  And, on one or two occasions, I actually left my hospital room to "go for a walk", which included a driver waiting downstairs to help me make a quick getaway to attend my class right down the road for an hour or so. 😆  I didn't tell all my professors about my CF, even when I had to be admitted during the school year, but twice I had to:  once when I was admitted right before final exams, and again when I needed an extension on a paper due to being in the hospital.  Everyone was very polite and accommodating both times I needed a break.

Learning to manage school and CF as a young child is an important part of learning to grow socially while also learning how to deal with CF's requirements and complications.  College is an important time to learn autonomy, both as a person and as your own caregiver.  This is the time you have to learn to take of yourself FOR YOURSELF, not for your parents or whoever has been driving you to do treatments up until that point.  And further education and CF is good practice for learning how to balance CF needs with the demands of the workforce you will someday enter.