CF Awareness Month | Living with Cystic Fibrosis

May is CF awareness month. Typically the CF Foundation hosts their “Great Strides” fundraisers this month. The movie theater may jingle a can for spare change for the “Jimmy Fund” during previews or you may even be able to buy a red sneaker sticker at the grocery store…all to support research and funding for the Cystic Fibrosis Foundation. 
I have Cystic Fibrosis. I mean, it’s something I wish I didn’t have, but I also wished I had a million dollars. There are some things we can control and some we can’t. I can’t control the fact that I live with CF. What I can control is buying lottery tickets… ha! No, seriously, what I can control is how I choose to live my life regardless of having CF. 
Part of living with CF, actually, a huge part of living with CF, is your daily care. It takes a lot to stay healthy. I do nebulizers, physical therapy, normal exercise and breathing exercises. I take pills (lots and lots of pills), I do inhalers and I try to eat upwards of 3,000 calories a day… and that’s when I’m healthy. When I’m sick I do more things. Sometimes I even do 2-3 weeks of home IV’s. 
One would think that after almost 23 years of doing these things, they would be old hat–that it would get easier. It doesn’t. I use alarms on my phone to remind me to carve out time during my day to do my treatments. It’s a huge mental struggle as well. Every time I open my medicine drawer it’s a reminder that I’m different, and that sometimes my life can be unfair and hard. But then I do my meds and get on with it.

Another big part of your CF care is going to Clinic. I see a great team at Johns Hopkin’s Hospital every 2-3 months. Again, this is when I’m healthy. My visits could be as frequent as every 2 weeks when I’m sick. I went to clinic yesterday for my 3 month check-in. As soon as you enter the hospital, after getting your bright orange patient band, you don a blue mask. It’s critical for CF patients to mask up since the ‘bugs’ we culture in our lungs can be easily transferred to another CF patient. The less we culture the better we feel.

You get your weight checked, you do a breathing test called a PFT, or pulmonary function test, and then you get seen by a bunch of people. You come up with a plan based on how your lung function looks. I was at the hospital for 4 hours yesterday. Thankfully, my lungs look pretty good. My weight finally went up, and we have a great plan in place for when I move to Florida. 

While my life with CF isn’t glamorous by any means, it is my life and the only one I get. I fully intend on doing everything in my power to live life to the fullest.


Continue Reading

Balancing Motherhood & Illness

Life has a certain ebb and flow when you live with a chronic illness. Good health is something not taken for granted. For most fighting a chronic illness, healthiness is something we are always acutely aware of. When we’re healthy we relish how easy it is to breathe deep to laugh, the luxury of simply taking the stairs or how playing outside today won’t cause hurt tomorrow. Under this magnification of appreciation you also become gravely aware of the first sign that you’re slipping. You might notice the extra pause you take when lugging in groceries, the slight resistance of the joints in your hands when you go to make your morning coffee or the weight of your chest when having an impromptu dance party. 
It’s in these small signs that we know our health is fleeting. Where we were once happily gazing out into the future on our hill of health, our bodies have sent us small warnings that we’re slipping. We’re no longer standing on top of the hill but sliding downwards.  We can use these signs to fortify our defenses & up our effort of putting our health first so we can fight to get back on top of our hill.
Yet sometimes, that’s just not what happens. Sometimes, despite all your effort, despite how hard you push, you keep sliding backwards. The peak of your hill gets smaller as you get further and further away. You grapple at anything on your way down; you dig your heels in, your hands snatching at roots, finger nails digging into the dirt and praying you can just hold on. But when gravity gets ahold of you halfway down that hill, you know you’re out of luck and out of options. There is just no way you’re making it back to the top of that hill without someone to help you get there.
That’s what living with CF is like: a constant battle to stay atop your favorite hill.  The hill where, at its peak, your baby girl sits patiently waiting for you to get back.

Emerson’s young now, so she doesn’t realize the subtleties of my illness. For now she thinks that all Mommies need nebulizers. I keep a jar of enzymes on the counter so I can reach in and grab a few before I eat… to her that jar is normal, my pills, are normal. The bright blue vest I strap to my chest to shake for half hour increments? Normal. Maybe she thinks that all mothers use these things. Maybe she thinks that one day she’ll need these things too.
Yes, Emerson is young now and she doesn’t understand why some days I can play, and others I can’t. She doesn’t understand the aggravation of not being able to meet her demands, because my body already had too many. She can’t comprehend that I sometimes have to put myself first, out of love for her. And when she cries because she doesn’t want me to do my vest any longer, when she signs “all done” as I bring out my morning nebulizer, or when I simply don’t have the energy to go outside and she cries at the door… she doesn’t realize that it’s heartbreaking for me. That I too, don’t want to stay inside to do my meds, but I must and so I do.
Balancing motherhood with my disease is hard- tremendously, terrifyingly, and staggeringly hard. Maybe one day Emmie will understand, that we’re all just navigating life the best we can with what we were given. Maybe one day she’ll look back and recognize all the sacrifices I make as a mother with CF so that I could have one more day to hold her, one more day to tell her I love her, one more day of being her mother. For now, that’s all I can hope, and it’s that hope that keeps me fighting day after day to get back to the top of that hill. 

Continue Reading

Being the Best Self

I’ve been trying for a while to write about my daily battle with Cystic Fibrosis. Everything I write just doesn’t sound accurate. There are some days I have energy to sew, cook dinner, do laundry and even head to the gym. And then there are days where maybe I manage one of those things. Other days, as I start to feel short of breath, or my lungs feel burdened with infection, I manage none of those things, and just managing to keep Emmie fed and safe is my accomplishment for the day.

Living with an invisible disease as an adult is very eye opening. I am no longer quick to judge someone solely based on appearance. I couldn’t say the same thing for 16 year old me, but a decade later, I get it. The person who parks in the handicap spot, who looks perfectly healthy and capable -who knows what battle their fighting behind closed doors? I get it. I really do. Everyone has their own antagonist and who am I to judge them without even knowing any of their story. Some days I surely don’t look sick, but I really do fight a daily battle.

Sometimes it’s a physical battle: coughing, fevers, swollen achy joints, throwing up, or debating whether I have the energy to go to the store to get milk. Other times it’s a mental battle: dragging myself to do at least one more round of therapy, convincing myself that it’s worth it to leave my cozy spot in bed to head downstairs and take the forgotten nighttime pill or simply rallying my inner cheerleader as I do a nebulizer for what seems like the millionth time.

While I may find myself frustrated with some of the stresses CF puts on my life as a mom, wife, and as a twenty-something year old member of society, I hope that it also presents the opportunity to teach my child to be compassionate, caring, and selfless. I hope she grows into a young lady who doesn’t judge people by the seemingly simple context of appearance, but learns to appreciate everyone’s strengths and weaknesses while acknowledging their silent battles.

We find ourselves living in a world where it’s easy to hide behind computer screens and cruelly typed words. I want her to understand that we can be better than that. We can replace judgement with compassion, hatred for acceptance and frustration with patience. We can be confident in ourselves and be kind to others. We should always push ourselves to be the best self we can be and while sometimes my CF seems like a burden, I know it’s helped push me to be a better person, wife and mother.

Continue Reading

Hello Again

I had some annual blood work done not too long ago. And once a year I am the lucky participant in a 2 hour glucose tolerance test. You know that nasty “fruit punch” flavored sugar water they make you drink when you’re pregnant? Yea, I get to do that once a year. I know, I know! Try to contain your jealousy!

Well, normally I’m always borderline failing this test. Then, at home when I check my blood sugar levels, they seem to be alright. Thus far, I’ve managed to squeak by without needing to check much. Well, the time has come where I have flat out failed. *cue violins*

While checking my blood sugar, and possibly adding in insulin to my routine, is not something I am particularly looking forward to, I am looking forward to the possibility of finally having an answer as to why I’m really struggling with weight gain. not your average problem.
With this Cystic Fibrosis Related Diabetes, CFRD for short, under control maybe I can start packing on the pounds again, and stop looking like a lanky, awkward high schooler and start looking like the young adult I am!

So old friend, while I’m not super thrilled to see you, I guess you can stick around for a bit.
(You read that I’m all about cheesy puns right? It’s just that they’re so bad they’re gouda.)

 source /  source
Continue Reading