Thursday, May 25, 2017
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:
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
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
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. 😂
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
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 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
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...
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
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.