A blog about my beautiful life living with Cystic Fibrosis: to educate and help promote awareness and understanding associated with CF.
Dedicated to sharing my experiences of the good, the bad, the ugly, and the funny, so that all who so eagerly support the fight against CF, will know how much their love and support truly means.
Sunday, July 13, 2014
9 weeks and 5 days.
What has your life looked like the last 68 days? Think of all the exciting things you've done, the places you've gone, the people you have seen. Have you gone swimming? To the lake? Have you spent time outside working on that tan? Now, think about what you've been wearing these past few months. Short sleeved shirts? Tank tops? Swimsuit? Now, think about how many showers you have taken in the last 68 days.
I know, you're wondering, "what the heck do those random questions have to do with anything? How many showers, really?" Yes. Really.
The Best of Days
This past Friday was an absolutely glorious day. After 68 days of IV antibiotics, I got the "ok" from my CF Team to get my PICC line removed. I honestly felt like a five year old on Christmas morning: so excited and giddy with anticipation for my appointment. I was overcome with joy and the possibilities that lie ahead. Why was I so excited?
What does life for 68 days with IV antibiotics and a PICC line look like?
1. No real showers. I know what you're thinking, "ew." Yes, I still shower daily, don't worry. I just can't get the 4x3 inch area of my bicep wet where my PICC line lives. I can see you pondering such a situation. Most people cover their arm with plastic wrap or a bag, but that means someone has to help wrap and tape it up. It's a terrible feeling having to rely on people for such basic needs as showering. I, however, have come very talented in the areas of being able to shower without any covering and managing not to get my PICC line wet. I know, I am talented.
2. Cardigans. Lots of cardigans. It's summer, and it's hot. My morning usually consists of planning what cardigan I am going to wear for the day to cover up my PICC line. It's 92 degrees outside, and what am I wearing? A cardigan. I am sweating to death, but that cardigan keeps my secret hidden beneath its sleeve. My pasty white arms yearn to see the sun.
3. A strict schedule: calls to Homehealth, deliveries of IVmeds every few days, weekly PICC dressing changes, trips to the clinic for lung function tests, consultations with my CF Team, every 8 hours of administrating antibiotics, and planning my day out to fit all CF's demands.
4. Patience. I have learned that it seems like in an instant an infection can flare. That all the hard work and progress I've made can be so quickly undermined by an exacerbation. That my lung function can quickly plummet 1O% after working for so long to get it up. That my body can quickly rebel. I have learned that the fight takes patience. That I am not going to win this battle in a day: it may take 68 days, or more. That things might get worse before they get better. There's no sense in wishing things to be different because they're not. This is the life I have been granted and with that I am thankful for each battle and the patience to endure.
5. Sleeping. When I am hooked to continuous IVs, sleeping isn't the most ideal. My "European Satchel" comes to bed with me, and often times I awake in the middle of the night wrapped in tubing. I also have to make sure that I don't abuse my PICC line too much with tossing, turning, or sleeping on my arm.
When you pick out your clothes in the morning think about having to cover your arm. When you hop in the shower to quickly rinse off think about not getting your arm wet. When you go to sleep think about not sleeping on a certain side. Think about the first thing you have to do in the morning is "hook up" and how the rest of your day is going to play out.
Friday morning I awoke filled with so much excitement. Excitement to reach 48% lung function. Excitement for freedom from a strict 8 hour schedule, no cardigans, a real shower, to go swimming, to sleep untethered. Excitement for freedom, even if I know it won't last forever. No matter how many days I get of "freedom," I will be immensely thankful for each of them and grateful for my CF Team that has helped me reach this point. Love to you all.