Imagine this for a moment:
It's the beginning of a new year. You're determined to stick to a budget this year, and are having fun figuring out ways to cut back, venturing to new grocery stores to save a few bucks, and meal planning like crazy. You got sick with a cold around Christmas, so to be on the safe side you're doing a course of IVs at home to make sure things don't get crazy with your lungs, and it seems to be working because you feel almost like your old self again. You're also determined this is the year you get to the bottom of why you can't get pregnant after 2 1/2 years of trying, so you go to see your lady doctor, who figures out what's probably causing the problem and implements a plan of action. You're excited to see what 2018 has in store with its bright new beginnings.
And then you catch the flu. Despite all the precautions you've taken to avoid it, it finds you. And it's every bit as terrible as you feared it would be. And it burns in your lungs like nothing you've ever felt before. But gradually it feels a little better, and you think maybe those antibiotics you've been on have protected your lungs from any real damage.
And then you go to your CF appointment a week later because your lungs are starting to feel crazy gunky again and you realize you probably did NOT escape some nasty lingering effects from that flu.
And then you find out your lung function has fallen to 28% on top of feeling terrible, so it's time for a hospital admission/tune up.
And then you start your normal cocktail of IV antibiotics, but still keep feeling sicker and sicker each day. Getting to the bathroom is a huge feat, and taking a shower sitting on the shower chair feels like the hardest thing you've ever done in your life.
And then you realize it's February 6th and you've missed your friend's birthday on the 4th without even sending a Happy Birthday text, and half jokingly wonder to yourself if you can blame it on the nurses because no one ever changes the date on the white board in your room.
And then you're waking up to the sound of your husband's voice saying "Sweetie, squeeze my hand if you can hear me. Can you hear me? You've been very very sick for a long time now. You've been on something called ECMO that's been keeping you alive. You had a lung transplant two days ago. It's March 4th now. They're about to put you back to sleep for a few minutes to take you off the ECMO machine, and when they wake you back up we need to see if you're able to move your right leg, ok? It's important that you try to move your leg when you wake back up, ok? Squeeze my hand again if you understand me."
To be continued...
Wednesday, May 31, 2017
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
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
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
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
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
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.