Random thoughts, fears, and being a rockstar

It’s been one of those weeks. The kind where the normal stresses of life blend with exhaustion, sickness and heightened emotions to create a thick grey cloud that hovers directly overhead. The kind of week that brings tear-filled telephone calls to family members and extra time spent thinking about some of the less-than-pleasant things in life.

For the fourth time in six months, I’m back in the hospital. I’ve tried to be positive and I’ve attempted to hide my frustration from that sweet little blondie who calls me “Mama.” But the fact of the matter is, this sucks! And she knows it as well as I do.

The night before I left for the hospital, Morgan slept in my bed with me. Sometime in the early morning hours, she started crying in her sleep so I pulled her closer to me, told her that I was there and tried to kiss away whatever darkness was filling her dreams. And that’s when, still asleep, she tearfully said, “But I don’t want my Mama to go to the doctor.” Right then and there, my heart shattered.

The next morning, we were just about ready to walk out the door when I knelt down to zip Morgan’s jacket up. “I don’t want you to go,” she cried. “I want you to stay at home with me.”

“I wish I could,” I told her. “But Mama needs to go to the hospital to get feeling better. I know it’s hard, but we can do this. We’re tough. We’re rockstars!”

I don’t think I’ve ever said that before. We’re rockstars? I’m not even sure where it came from, but in the moment it seemed like the right thing to say. I think I was trying to convince myself as much as I was trying to convince her… and it kinda worked.

Hours later, after once again blowing pretty dismal PFT numbers, I was making my way through the hospital to the CF clinic when I felt tears pricking the edges of my eyes. Why was I crying? I knew this was coming. I’d been sick for a couple weeks and knew a hospital stay was inevitable. I was prepared for this. I’m tough, I reminded myself, recalling the words I’d said to Morgan earlier that morning. Then I took a deep breath (well, as deep as these lungs would allow) and began silently chanting to the rhythm of my boots hitting the tile floor… I’m a rockstar, I’m a rockstar, I’m a rockstar.

There are a couple things that are bothering me more than usual this particular stay. First, the fact that Morgan has never struggled this much with me leaving home. She is beginning to realize that there is something different about me, but she’s not sure what it is or why. She asked Adam the other day, “Why does my mom have to go to the doctor a lot?” And just today it was, “Mama, do all mommies live at the hospital sometimes?”

I’ve always known she’d eventually start asking questions, but I wasn’t prepared for how difficult it would be to answer them. Serious questions deserve serious answers. I’m going to have to get a lot better at coming up with honest yet child-appropriate answers on the spot.

The other thing that is getting to me, that has been on my mind a lot these days, is how frequently my lung function is falling into a range much, much lower than I’m comfortable with. I hear it all the time: CF is a progressive disease. Slowly losing lung function over time despite making every effort to stay healthy… that is the nature of this beast. This is something I’ve always known. But now that it’s becoming a reality for me, now that I’m consistently blowing numbers 30-40% lower than just a few years ago, it’s suddenly a lot to handle. And it’s hard. Really, really hard.

But I think it’s okay to admit these things; that I’m scared about the future, that I don’t have all the answers to the hard questions, and that sometimes life is hard. I don’t think saying those things makes me any less of a person. In fact, I like to think that having those fears and learning to face them makes me stronger. Fear isn’t a pleasant emotion, but it certainly can motivate a person. Things aren’t as easy as I’d like them to be right now, and life is full of uncertainties – even more than usual, it seems – but I’m certain we’ll get through this and everything else life throws at us. Even when it’s really, really hard.

Right now Morgan is lying next to me in my hospital bed, sound asleep, but before she dozed off we were talking, our bodies sidled up next to each other and her head nestled into my neck. “I’m so happy you came to see me today,” I told her. “I’ve missed you.”

“I miss you too, Mama. But it’s okay, right?”

“Yeah, baby,” I whispered. “We’ll be okay. We’re tough.”

In fact, we’re rockstars. And rockstars never, ever give up.

That time I thought I was dying

Details and “the rest of the story” will follow but for now, here are a few of the highlights:

– I’m in the hospital again.

– I scored my first trip in an ambulance on Tuesday night after having spent most of the evening in my local emergency room.

-The crippling back and chest pain I was experiencing with each and every breath in addition to the unusual heart palpitations I’d had a few days earlier made for an excruciating interesting evening of physical and mental torture all kinds of medical testing.

– The diagnosis: Pulmonary Embolism

– More tests conducted when I arrived here at the U of U revealed that there were actually multiple clots in both lungs, as well as one slightly larger clot in my heart that had attached itself to the tip of my port.

– We are about 98% certain the blood clots were caused by my birth control (which makes the text message I sent to my cousin a few nights before the incident that read “I think my birth control is killing me!” seem a bit less dramatic).

– At one point I had three separate points of access to accommodate all the meds they were pumping into my body – my port plus two peripheral IVs.

– That was before I went into surgery to have my port pulled; now, several days later, I’m down to a dual lumen PICC line. I was able to properly grieve the passing of my port when my surgeon brought it to my room in a bag later that night so I could say goodbye.

– One day (I think it was Thursday?) I decided to count the number of needle-sticks I got in a 24 hour period. I lost count after nine.

– This has been without a doubt the most terrifying and painful experience of my entire life! Almost a week later, I feel like my head is still spinning. I’m physically, mentally and emotionally exhausted and still in pain a lot of the time, but I do feel like things are getting better each day.

– For everyone who has been aware of the situation, I want to let you know how much I appreciate your positive thoughts and words of encouragement! Adam and I couldn’t have made it through this last week without your love and support. From the bottom of my (slightly malfunctioning) heart, thank you, thank you, thank you!

Just with less making out in the elevators

Sometimes I feel like living in the hospital is like living on a TV show. This hospitalization has had nearly all the elements of a good medical drama episode:

The drama – emotional ups and downs, gossip at the nurse’s station, crazies on the elevator, orders being entered incorrectly (which results in all kinds of fun).

The mystery symptoms – nausea and vomiting, unexplained widespread pain, various body parts going completely numb, crippling pain in my hands.

The diagnosis – allergic reaction to the meds.

The heartache– in the short time that I’ve been here, two CF patients have tragically passed away; one during a double lung transplant and the other quite unexpectedly.

The little victories – my PFT’s are up, I took five flights of stairs twice today (only stopping to rest once each time), and I’ve gained back most of the weight I lost during the first week of this hospitalization.

The sexual trysts in empty on-call rooms – okay, so this one isn’t really happening but I certainly got your attention, didn’t I?

It’s been an interesting stay, to say the least. If you asked me last week, I’d have told you there had been a terrible mistake; I was supposed to get a room in Acute Internal Medicine, but somehow I wound up in Hell. Between the issues with my PICC lines, the nausea that prevented me from eating for three days and multiple allergic reactions to the medications, I was NOT a happy camper.

Fortunately, the meds are doing their job and even though I felt like last week wasn’t very productive, my lungs feel differently. Having surprisingly good PFT’s on Monday was exactly what I needed to snap me back into, well, back into being me. However, my own good news is thrown into sharp relief by the deaths of two members of the U of U CF family. I only had a couple brief encounters with one of them, and I never had the pleasure of meeting the other, but their deaths have greatly affected several people that I do know and love.

There has been a noticeable dark cloud hovering over the CF unit. Both the patients and staff are very shaken up over what has happened. I don’t think a lot of people understand the bonds that are formed in this type of hospital setting. I’m still fairly new to the scene and I spend a lot less time here than some of the other patients, but when you total it up, 2 of the last 13 months of my life have been spent in this hospital. In that time, I have formed true friendships with some of the nurses, respiratory therapists and members of the CF team. With each stay those friendships run deeper, those bonds become stronger. These people are absolutely heartbroken over the recent losses, and that makes my heart hurt. After learning of the second death since my arrival here, I had a moment of pure anger and frustration. Not for myself, but for the friends and family of these two individuals.

I’ll be going home Friday and I can’t even tell you how excited I am to sleep in my own bed and be home with my babies. Even though this hospital life is a little bit like an episode of Grey’s Anatomy (and we all know I love me some Grey’s) I’d MUCH rather be home, spending my evenings like this:

I want to thank everyone for their thoughts,
messages, calls and visits. They really do
help more than you’ll ever know.