“We just see things differently,” is something I’ve heard a lot recently. And I suppose that’s true. Where some see oppression, I see an accessibility tool. I am able to navigate the world more safely when both myself and others are wearing masks.
Where some see a violation of rights, I see concern and kindness for others. A person’s willingness to wear a mask for the protection of the people around them is, to me, an incredible act of love.
Where some see “fake science” and biased information, I see sound evidence coupled with years of personal experience. I’ve worn masks for decades (with lung function as low as 27%) without ever experiencing complications. My team of care providers and dear friends in healthcare have safely and effectively worn masks throughout their careers, sometimes for the duration of entire shifts or lengthy surgeries. (Spoiler alert: they’re all fine.)
Where some see “sheep” blindly complying and following sinister orders, I see community, love, unity, and a combined effort to care for one another and combat our common enemy.
If the way I see things turns out to be wrong, I will have unnecessarily worn a mask for a few months. No biggie. But if the way I perceive things is correct, and people have refused to take precautions, we’ll experience a tremendous amount of preventable loss and heartache.
I’ll wear the dang mask. This is something I’m willing to be wrong about.
Today marks six months (180 days) on Trikafta for me! 🎉
Quick explanation for those unfamiliar with Trikafta: it’s the newest of four drugs called CFTR modulators. These medications are specific to cystic fibrosis and help correct the underlying defect in our cells rather than just treating symptoms.
I started Trikafta in November, near the end of a 2 week hospital stay. For some people, within hours of taking their first dose they noticed changes in their breathing or how their body was feeling.
I was NOT one of those people.
The changes I experienced were slower and more subtle. I began feeling like I was disappointing people when they’d ask how I was feeling because I didn’t have much to report.
My biggest “wow” moment happened when, after two months on T, I was sledding with my extended family and ran up a hill without thinking twice about it. I don’t run ever run, but especially not uphill! When I realized what I’d just done, I did it again and again.
Now, six months into this journey, I still can’t tell you when certain things happened since it’s been so gradual, but I can tell you that my body has indeed transformed.
For one, I don’t cough anymore. It’s the most bizarre thing! Something that has been so normal my entire life is now just gone!
I saw a roughly 8% increase in lung function, giving me my highest PFTs since 2014.
I rarely cough up any mucus. My treatment needs haven’t changed – I’m still doing just as many as I was previously, but I’m not getting a mouthful of mucus each time I cough. (CF is so glamorous, isn’t it?)
My digestion has changed significantly, and I’ve gone from needing to take 5 enzymes with meals to 2.
I’m not sure many people understand how painful CF can be on a daily basis. Lungs, joints, stomach, sinuses, overworked muscles — something is always hurting. But I now have more pain free days than I’ve had in years.
This isn’t even a complete list of the changes I’ve experienced, just the most significant ones. Most days, I still have a hard time wrapping my head around it all to be honest.
Every single day, I am amazed. Every single day, I remain hopeful. Every single day, I am grateful.
May is Cystic Fibrosis Awareness Month! If you’ve been around here for any length of time, you know that CF awareness is pretty much always my MO, but this month is made for it!
Throughout the month, I’ll continue to share things about CF here and there (per usual) but what I really want to do is let YOU take over.
If there is anything you’d like to know about CF, particularly regarding my personal experiences, please ask! No question is too big or small, no topic too sensitive.
Are you curious about what life was like with three CF kiddos in our family? Do you wonder how the partner of someone with CF feels (a question for Randy)? Do you want to know more about what CF is or how it affects the body? Do you have questions about pregnancy or parenthood and CF? CF and college? CF and relationships?
I would love to answer these or any other questions you may have! I’m an open book. Please feel free to comment here or send me an email: email@example.com
I look forward to chatting with you and doing more of something I am incredibly passionate about — spreading CF awareness!
In recent weeks, my faith in humanity has been both shattered and rebuilt more times than I can count. I’ve seen people coming together, supporting one another in ways that make my heart sing. But I’ve also witnessed some of the most selfish behavior and disheartening discourse surrounding all things related to COVID-19.
Something that has really stood out to me is the inherent ableism in the way we talk about this pandemic and how we’ve been treating the most vulnerable among us.
There’s something I need to get off my chest in regard to all this, and I really hope my able-bodied friends are listening: I AM NOT EXPENDABLE!
Every time a news anchor prefaces a COVID-19 story by emphasizing that it mostly affects the elderly and immunocompromised, it sends the message that the well-being of vulnerable populations is secondary.
When friends say that this is “only” killing those with underlying health conditions or the elderly, it feels as if my entire existence is reduced to “only.” Something expendable. Nothing worthy of concern.
When considering the very real possibility of having to ration healthcare, and the decision is made to prioritize the young and healthy over the elderly and disabled, once again the message is that certain lives have more value than others.
It’s both saddening and elucidating to see how quickly employers and educators have made accommodations that would have greatly benefited disabled folks in the past— things like increased work-from-home options and distance-learning curriculums.
Throughout all this, the message (whether intentional or not) has been that the lives of disabled people are less valuable. I emphatically reject that!
I have a genetic disease that makes me more vulnerable to the effects of this virus, but that does not mean I am less worthy of accommodations or life-saving care.
My life expectancy may be shorter than that of others, but that does not make my life less valuable. When people debase the worth and value of folks like myself, quite frankly, it makes me mad as hell
Disabled lives have value. Immunocompromised lives have value. Elderly lives have value. We are worthy of concern and respect.
Is it just me, or have you also lost track of time entirely? It feels like it’s Frensday the eleventeenth of Marchtember. Time is a construct that has no relevance to the way we currently live our lives, except for the fact that Randy is an essential employee so he’s still going to and from work (more on this later). Other than that, clocks and calendars might as well cease to exist.
We’ve been social distancing since the first week of March when Morgan came down with a mysterious virus. You can read more about that here, but long story short: she was sick for three weeks with what we think probably definitely maybe wasn’t coronavirus. I kept her home from school for a week, then as the COVID-19 situation in our state progressed, I decided to pull her out of school for a while. That same day, the governor announced that all K-12 schools were closing anyway, so we’ve officially been homeschooling and social distancing since March 5th.
The first couple weeks, my mental state was, quite frankly, a mess. My underlying anxiety decided it was time to shine and I was in a constant state of panic. Panic cleaning. Panic eating. Panic cleaning some more. (My house has never looked so good, but it’s kind of a bummer that it takes a global pandemic to make it look this way.)
I’m used to being “high-risk.” I’ve fit into that category my entire life, and I live my life accordingly: taking extra precautions, always being aware of my surroundings and the risk they present, making my health my top priority. But those words — “high risk”– seem to carry extra weight when we’re talking about something like COVID-19. High risk of serious illness. High risk of complications. High risk of death. Those aren’t things that sit well with me. Hence… anxiety and panic.
But I think that’s okay. In fact, I think whatever a person is feeling during these times is okay. I’ve run the entire gamut of emotions from angry to sad to hopeful to upset and just about every other feeling imaginable. Sometimes I experience all those feelings within a few hour time period. And that’s okay! The point is, these times are completely unprecedented. None of us have experienced anything quite like this. The feelings we’re having are bound to be as complex and complicated as the situation we find ourselves in.
As I mentioned before, as a corrections officer, Randy is an essential employee. This adds a layer of complexity as we are incredibly grateful his job is secure and income is steady, but going to work puts him (and subsequently our whole family) at risk. We’re taking extra precautions here in the home, and if our geographic area starts seeing more cases or we know of potential exposure, he may end up temporarily moving out to our camp trailer.
I feel for every person who is an essential employee, putting their lives at risk during this time. Our country is currently seeing how essential some jobs and people are, and I sincerely hope that some changes will be made to benefit them as a result of this pandemic.
We are trying to get outside as much as possible. Our state has a “Stay Safe, Stay Home” directive, but we are encouraged to get outside for fresh air and exercise, as long as we are able to do so without coming into contact with other people. I’m so glad that we live in an area that allows us to get outside and explore pretty freely. Here are a few pictures from our recent outdoor adventures.
Here in the home, we’ve tried to stay entertained by crafting, creating, and just taking this opportunity to appreciate our time together. We have a standing date for family movie night whenever Randy is off work. We’ve baked. We’ve made jewelry. Morgan made a shelf. We’ve painted on canvas, paper, rocks, windows, and Easter eggs. We’ve planted grass in a terrarium and flowers outside.
Oh…. and we did another (absolutely crazy) thing…. we welcomed a new puppy to the family! We suddenly have plenty of time on our hands to spend potty training and loving on a new little pup. Plus, we can use all the extra laughs, loves, and snuggles we can possibly get these days. His name is Harlo, he’s an 8 week old chiweenie, and we are so in love with him.
So, that’s where we’re at. We miss our family and friends, but so far, social distancing hasn’t been the worst thing. So often throughout Morgan’s life, I’ve wished that I could pause time. In a way, it feels like that’s what’s happened right now. We’ve got all the time in the world to spend together with nowhere to be, nothing that HAS to be done, and there are no distractions. At the end of each day, I keep reminding myself that we did it — made it through another day! We’re together. We’re safe.
I don’t know what tomorrow or next week or next month will bring. But if I focus on each day, on the moments we have together as a family and the many ways in which we are truly fortunate, I can keep the anxiety at bay. Amid all the uncertainty and unpleasant emotions, there is somehow still a sense of peace and calm.
The other night while watching a movie together, Morgan looked up at me, smiled and said, “I’m glad we’re quarantined together.” Me too, sweet girl. Me too.
I want to know, dear reader… how are you? How are you managing during these crazy times we’re living in? What is your mental state? What are you doing to keep busy? Are you homeschooling kiddos? Who is your quarantine crew? Did you also eat all your quarantine snacks by day three?