Well… here I am. Blogging again. It’s been, well, a long time. But things have been tough and I promised myself that I wouldn’t push myself to blog unless I had the time, energy and most of all something to say. Before I go on I have to remind whoever is reading that this blog is about honesty. It’s just about how I feel today, right now.
I turned 30 a few weeks ago and I spent the two weeks prior to this somewhat momentous birthday either in hospital or on home IV antibiotics… again. Today, yet again, my breathing is strenuous and my lungs are overflowing with that disgusting, exasperating, aggravating and frustrating sticky CF mucous that seems to make my life a living hell. Today at clinic, I discovered that my PFT’s are as low as they’ve ever been and that I need to go back into hospital for treatment.
During times like this, it’s hard not to think about the inevitability of CF and whether or not that’s getting just a little bit closer for me. The median age of survival for people with CF was 37 and within the last couple years or so it has increased to about 47. Part of me is thankful that more and more adults with CF are reaching middle-age and beyond but the other part of me can’t help but think that if it’s this hard now, what is it going to be like as I age? These thoughts have been clouding my true beliefs about life for a long time and I can’t seem to find any clarity or sunshine. Peace, enjoyment, and pure happiness are things I’ve been seeking. I’ve had moments of these but after hearing that my lungs are yet again full of infection, it’s not easy maintaining those moments of peace, enjoyment and pure happiness. It’s difficult when nobody really understands. I mean, even others with CF… we’re all so different. It’s hard not to get terrified of what CF will feel like in 5 or 10 or 20 years. I’m not sure why things are different now. Why I feel the need to prepare myself for what it’s going to be like. All I know is a cure would sure be nice right about now. I think the truth is that as a kid, I never thought about the inevitability of CF because I actually believed a cure would have been found by now. I don’t want to have to go through a lung transplant and I’m getting so freakin’ tired of the hours spent trying to prevent lung infections and then despite my best efforts, getting lung infections ANYWAY! I mean come on! Some of my health care professionals have told me that for reasons they don’t yet know, woman with CF and CF-related diabetes have a higher mortality rate. I said to them, “well what the fuck!” Sometimes it’s just so discouraging. I just really hate it right now. My last hospitalization was so awful and I’m SO not looking forward my next hospitalization. You should have seen the text I sent my sisters today after hearing the news. Let’s just say I don’t think I’ve ever added such colourful words to a text before.
I think what bothers me the most about being in the hospital is the lack of respect you often get and the inexperienced health care workers who practically insist on driving me crazy. I know you need to build experience somewhere but sometimes I just can’t answer anymore of their stupid questions. When I get admitted back to hospital, do you suppose it would be appropriate to put several signs on my hospital room door directed to ALL hospital personnel? The first one would say something to the effect of…
To all Lab Tech’s, please read. If you must draw pre antibiotic blood levels or any other morning blood work, I would advice you to gently warn me to cover my eyes before you flick on the lights and draw my blood. After having a shitty nights sleep, my mood in the mornings are a bit dicey. By simply allowing me time to cover my eyes will save you from an unpleasant patient experience.
To ALL 10 thousand of you residents trying to get into my room for an assessment every single morning: First and for most, you don’t know me. Do me a favor and ask me a question about how I’M doing. Not my lungs, not my sugars, not my fever or cough or sputum or anything else. Ask me, how I am. Just that one question that would take no longer than 2 minutes would allow you to put those “caring” and “empathy” words into action which they may have brushed over in med school. I’d also appreciate it if you’d talk to me like a person and not a patient. Even the simple task of sitting down and talking to me at eye level changes the whole patient-doctor dynamic. I guarantee you will get a better response from me, you’ll get honest and accurate answers from me and I will ALLOW you to do a proper assessment… with less attitude on my part. But please, to avoid me from going absolutely crazy, document our conversation, your assessment and your recommendations so I don’t have to repeat myself to all of the other thousands of residents that come prancing in my room, eager and ready to learn how to be a good doctor. This will stop me from saying smart-ass comments that will likely make YOU feel like an asshole.
And finally to my lovely nurses: Some of you are great and some of you need some guidance. Please recognize that I’ve done this my whole life and I don’t need you to tell me when and how to do things. Ask me questions. Joke around with me. Brighten my day with a funny story about some crazy code white patient while you’re taking my vitals. And never, EVER tell me what I “should” be doing. Believe it our not, I actually know more about CF than you.
To any other hospital personnel, don’t bug me early in the morning. And don’t ask me stupid questions. I know you’re all very busy and important people, just remember, the patient actually has all the answers to your questions and if you treat us with respect, we’ll treat you with respect and we’ll give you the answers you’re looking for.
Thank you kindly
You know I’m usually quite patient in the hospital and willing to put up with all the things you need to put up with. But at the end of the day, my patience only goes so far. Ugghhh!
After all this cloudiness and dread, I (luckily) have had moments of clarity and sunshine thanks to some inspiring people in my life. It’s clear to me that support is needed in a way that goes beyond the definition of support. For me, my strength comes from the support I get from so many of you out there and it’s become obvious to me that when my tank of courage, strength and will gets low, a quick (or long) stop at one of my many support stations is needed.
Like Shannan Brown, my coach. She’s quite simply amazing to me and so unbelievably helpful. I had the opportunity this summer to attend a “Shift-It” retreat that she put on and I would HIGHLY recommend it to anyone who feels “stuck” in his or her life and needs a change. She had the small intimate group of us do exercises that fed and created ahha (if I may borrow Oprah’s famous saying) moments, moments of clarity, and moments that made you go “Ohhhhhh ok”. It was such a great weekend. I left Shannan’s feeling re-energized, inspired, hopeful and understood and I will always be incredibly grateful for her. My upcoming and muchly needed stop to fill up my tank I think will require a good old smash‘n’swear inspired by Shannan. They’re such a great release!
Erin Wallis you are another way for me to fill up my tank which I recently did after reading one of your many inspiring blog posts. Without even knowing it, you remind me to appreciate what I have, stop and enjoy the small yet amazing things in life and through your generous support to Cystic Fibrosis Canada, you make me feel loved and cared for. You really are one of a kind.
Laughter is one of my other ways to fill up my tank. Whether it’s going out with my girly friends, watching video’s of my nieces and nephew, watching a funny movie or having almost an hour’s texting conversation with one of my dearest friends who makes me giggle when she makes comments like “ya that did suck a big dirty goat ass”! You know who you are and I love you!
Like Shannan taught me, life is about balance. I know I’ll get back to my regular sunshine self that is courageous enough to say “bring it on” to CF’s sometimes brutal shit. It’s just been cloudy for a while now. I know what I need to do to get my sunshine back, I know where to get help along the way and most of all, I know how lucky I truly am. Sometimes a little perspective is all you need. So... here I go.