I had a doctor’s appointment today. Same ole’ same ole’, I thought as I made my way through the twisty halls to the new adult Cystic Fibrosis clinic. I huffed and wheezed as I so often do when I have to walk farther than just a couple steps. My mother came with me. We sat in the waiting room. It’s so much more "grown up" in the adult clinic than I’m used to. For the past 21 years, I’ve been seen at the pediatric clinic and have gotten used to posters of cartoon characters on the walls. The clinic just doesn’t seem the same without hearing so much ruckus in the background: babies crying and nurses carrying on their own conversations. There is something oddly soothing about all of it. Maybe it’s that with so many distractions, it’s hard to concentrate on why you’re really there in the first place. Not this time though. It was practically silent in the waiting room at the new clinic, that is except for me. I’m a talker, always have been, especially when I’m nervous or upset about something.
I knew I was going into the hospital again. I was in the hospital in July, and by early August I was sick again. It was too soon to go back though, so I held out as long as I could. Now it’s October and I’m still sick. I have no other option, and, for the first time in a long time, I’m actually pushing to be admitted. I haven’t been as sick as I have been in the past, but six weeks is a long time to even have the sniffles, and I definitely had more than just the sniffles. I’m ready; I even went ahead and packed up a suit case last night. I put in a few pairs of pajamas, packed up all of my school work and my computer, and threw in a box of Cinnamon Toast Crunch, a bag of cheddar popcorn, and a can of cashews. There’s nothing worse than being stuck in the hospital without snacks. I brought a couple DVDs. This was a first for me; even as technology progresses, I still buy videos and usually can wrangle up the traveling VCR that floats from room to room in this hospital. Now I have my computer and can watch DVDs on it. I’m finally movin’ on up.
My clinic appointment went just as I had expected: my doctor, who is a delightful man, asked what I wanted to do, and I bluntly said "just put me back in. I’ve got nothing else to do for the next two weeks". Which leads me to here, room 578. Usually I’m on the 3rd floor, but there were no vacant beds, so they stuck me up here. It’s something else I’m going to just have to get used to, even though I’d rather not have to. I’d rather be in the comfort of 3 North, my home away from home. It’s not that 5th floor isn’t positively lovely; it’s just not what I’m used to. I’m used to the women’s health care unit, as opposed to this… this… well; I’m not sure what the 5th floor is for really. I guess it’s just a melting pot, where they stick all of the stragglers whose illnesses don’t warrant a specialty unit. It’s odd up here. I do have a private room. I don’t have to share. I’m not a demanding person generally, but I insist on having a private room. It would be one thing if I was just here for a few days, but I can’t share a TV, phone, and bathroom with somebody else for two weeks. Especially because in the hospital your life revolves around the TV, the phone, and the bathroom. I do, however, have to share the shower. I do not have a personal shower. This could be a problem. I don’t know about you, but showering is an experience I don’t want to share with other residents of the 5th floor.
The nurses up here seem very sweet and certainly competent, but they aren’t my nurses. My nurses are the same nurses I’ve had since I started going to 3 North when I was 11 years old. I know all about my nurses’ families, their husbands, and children, and even all of their pets. They know all about me, my family, and they’ve certainly been subjected to my endless ramblings about my pets. My nurses have become somewhat like family. I trust them, and I look forward to hanging out at the nurse’s station after most of the other patients have gone to sleep and hearing about the new children and grandchildren that have come into their lives. But, now I have new nurses, the familiarity is not there, and as sweet and competent as they may be, they are not my nurses.
I get visitors from time to time, family mostly, but occasionally friends, they’ll stay and hang out for a little bit, but I know this isn’t exactly where anybody wants to be, I don’t even want to be here. The vast majority of the time I spend in the hospital is spent alone. I’m alone all day until 5:30 when my mom comes over. She works so hard at her job, to have to come over here and entertain me for a few hours. She stays and watches the news and the last nights repeat of The Daily Show with me every day, and then she goes home at 7:30 to walk the dogs and finally relax. I stay and watch Jeopardy, something that we do together when I’m home. Usually, that’s the end of my visitation for the day. I have two whole hours a day where I have constant human contact. Other than that it’s just a few doctors or nurses poking their heads in to ask questions or bring medicines. Those two hours are the best part of my day.
This is my life. It’s filled with hospital visits and doctors appointments. Cystic Fibrosis has butted its way into almost every area of my life. There isn’t much that I do that doesn’t take CF into consideration in one way or another. But, everybody has heard this story before. It’s the same story of everybody else fighting a terminal illness. Life is tough when you’re constantly reminded of your own vulnerability. However, death isn’t the only thing that is looming on the minds of the chronically ill; we aren’t always living in a state of fear. We try to live our lives as normally as possible. It can be difficult though, with so many nuances brought on by our illnesses it’s a wonder we aren’t driven insane before our actual demise. I’ve compiled a list of the things that have irritated me lately. Among them are:
"Oh! You’re so tiny!" and other things you should never say to me
First, let me say that I try very hard not to be irritated by comments like this, because I know that they are generally kind and often meant as a compliment. But just because they were well-intended does not mean that’s how they will be received.
People with CF generally have a much harder time gaining and maintaining their weight. For me, it sometimes seems impossible. When I’m not feeling well, the first thing that goes is my appetite. I’ve been told continuously by my doctors how important it is that I keep my weight up because having extra fat can help fight off infections. But they don’t know how hard it is to keep food down when your body really doesn’t want to. So when I do have an appetite, I eat – A LOT. I try desperately to increase my weight to a point where it won’t hurt me as much if I get sick and lose a few pounds.
So, should you ever find yourself in my company and your instinct is to make a comment on my weight, or lack thereof, consider that you would never tell a person who is trying to lose weight how fat they are. So don’t tell a person who is trying to gain weight how skinny she is. It can be very discouraging.
I also get frustrated by people telling me that my face looks puffy (a side effect from a medicine that I take) or that I have bags under my eyes. I’m just as touchy about my appearance as anybody else, and I don’t want to hear how poor it is when I’m sick.
"The report of my death was an exaggeration." – Mark Twain
I am now among the elite. As far as I know, a select few people have had the need to debunk rumors of their own death. Notably, there was Mark Twain, Paul McCartney, a handful of former child stars – and now me. I recently received a phone call from a friend I haven’t spoken to in at least three years. We made small talk for a minute before she cut to the chase.
"Are you dying?" she asked.
"Unless you know something I don’t, no" I replied.
Apparently the word on the street was that my death was imminent. I heard it will take place within the next few months, and a local restaurant is holding a fundraiser to help my family cover the costs of my funeral. This, of course, was all news to me. I mean, I know my health hasn’t exactly been fabulous, but I expected to hold on for at least a few more years.
It’s amazing how these stories get around. Yes, a local restaurant is having a fundraiser but it’s for the Cystic Fibrosis Foundation, not specifically for me or my family. How this got translated into "raising funds for Samantha’s funeral," I’ll never know. If you know me and you hear a rumor that I’m dying, please, just call me. I’ll be happy to clarify it for you.
There’s nothing like telling a complete stranger all about your pee.
Except showing it to them. And, of course, my all-time favorite, being awakened in the middle of the night with a pee ultimatum. This is what happened to me overnight last night. I was woken up at 3 AM and told I either needed to pee in a container at least every 6 hours or they will be forced to call my doctors to come put in a catheter. So now, I am blessed with the obligation to talk about and show somebody my pee every 6 hours. But, at least I don’t have a catheter.
I’m sick of other diseases getting all of the attention; CF needs a better PR rep!
How come nobody ever donates their winnings from the Celebrity Poker Showdown to CF? Don’t get me wrong, there are tons of wonderful people out there who have worked tirelessly to help raise awareness and help find the cure. However, I can’t help but think that the more people know about CF the more willing they will be to donate their own time and money. Researchers are closer than ever to finding the cure. There have been great advancements, but the fact is CF is still here. I’m still in the hospital which doesn’t seem like a big deal at all when I compare it to my friend Linda’s situation. She’s in the hospital, too. But she’s hooked up to a ventilator after having rejected the new lungs she received in a transplant. She doesn’t deserve this, and as long as she is still on that ventilator, then enough has not been done.
Enough has not been done when my friend Melanie in Colorado is permanently attached to an oxygen tank, at only 22 years old. Enough has not been done when I hear that Becki is being treated horribly by the doctors at her nearest transplant clinic while she goes to the only place she can to get her new lungs. And enough has not been done when I look in the mirror and see a girl that’s practically emaciated because she’s lost her appetite, she’s sick again. She’s losing all of the weight she worked so hard to gain, and she constantly feels weak and fatigued. She works so hard to stay healthy; she does all of her treatments and takes all of her medicines and tries so hard, but it never keeps her healthy very long.
I know that Becki, Mel, and Linda, and I don’t deserve to have this disease. Nobody does. Not one person
that has died of this disease yet deserved to have it. This I am certain of. But, the fact is, we have it.
And now, the only objective is to kill it. n