Friday, December 7, 2012

Weird.

pictures help you remember
but what do you do when you look at a picture and you don't remember.
the love, joy, and laughter you shared doesn't come back.
the people who you spent so much time admiring became strangers.
who am I?
who are they?
and what were we doing together?
there was love.
I can sense it.
there was joy.
I can see it.
there was laughter.
I know it.

but where were we?
and how did we get there?

pictures help you remember
but what do you do when you look at a picture and you can't remember.

Wednesday, September 19, 2012

A Wrinkle..

I wish back rubs lasted longer.

Actually, I wish a lot of things lasted longer.

But alas, there must be wrinkles in time..

Some are pleasant, some are poor.

Wrinkles remind us of past, present, and future selves.

Memories haunted, and memories welcomed into our hearts.

Some memories go, some memories stay.

And sometimes, a memory,

A moment,

Is just a wrinkle in time.

But with each wrinkle, comes life..

Seize it.





Friday, August 17, 2012

What is CF?

A lot of people ask: "So, what is cf?" and they get the generic "Oh, it's a genetic.. blah, blah, blah." I think that response is great and informative, but I don't really always expect people to try to understand what it is and what it feels like to actually have Cystic Fibrosis.

Going along with the generic response, Cystic Fibrosis is a genetic disease that primarily affects the lungs and pancreas, clogging them with sticky, thick, mucus that requires extra care to prevent/rid infection, as well as pills and etc.. to properly digest food or vitamins.

Okay, now forgetting all of that and stripping it down to the rawest form.. what is cf and how does it feel to have it?

As a young child, I only mostly remember running around and getting stomach aches. I don't remember cf being that big of a challenge. I know my mom and dad were constantly on me to do my meds. and I almost always met them with an attitude. I know that I would get sick and THEN I would want to do treatments, but even then I was a feisty little thing. Anyway, so being younger, I always felt pretty normal, because I didn't exactly understand the gist of what was going on.

Getting older though, I started having more hospitalizations. There would be i.v. pokes, picc lines, port placements, feeding tube placements and bronchoscopies, etc.. Nearing hospitalization I would typically feel very short of breath. People describe having cf as normal people trying to breathe through a straw.

Here's a flyer I found with that comparison: http://cysticfibrosis.ca/assets/files/pdf/Straw_flyerE.pdf

Getting short of breath makes it difficult to do everyday tasks that most people consider simple, such as washing hair, climbing stairs, doing laundry, walking, talking, and breathing.

It became a sign that when I would struggle to be able to take care of myself and would cough more frequently that I had an infection and it needed to be handled with i.v. antibiotics.

The thing with cf is that people cough, and they cough very frequently. Some people mistake a cf cough as a smoker's cough, and although some people with Cystic Fibrosis do smoke, many don't, because smoke is especially bad for cf lungs and, in my experience, seems to cause damage very quickly whenever I'm around it. My lungs feel like they close up into little raisins around smoke. I usually cough more frequently, and I generally get cold symptoms after I've been around it but I digress.

I am used to taking mountains of pills, shots, inhalers, inhaled solutions and doing my vest. It is not something I love to do, but I try to do it regularly. I still manage to get stomach aches, nausea, bloating, vomiting, coughing, headaches, pain, and shortness of breath no matter how healthy I am.

Many years ago during hospital stays I required oxygen to be able to breathe. At night I would have nurses come in and they would tell me to cough so that my oxygen would go back up. I remember struggling one night to breathe, even with oxygen, and I honestly thought I was going to die that night.

I've had many times where I've questioned whether I would make it through fevers and lung infections. I know that my body is capable of handling a lot based on what I've been through, but at the time, something so regular now, felt like it was going to be the end of my life.

As I write this I'm trying my best not to exaggerate, but to make it as clear as possible to those who do not have cf and want to know exactly what it's like. I know everyone has different experiences with this disease, but many of us have the same challenges.

Going into the hospital, I've always expected to get better. Over the years I've responded relatively well to antibiotics in a short time. A few days into my hospital stays I can breathe better, my fevers are gone, and I have more energy to spend on things I like to do, rather than things I have to do.

As time passes, I also feel like some hospital stays have become less effective and I don't usually have the patience to try oral antibiotics anymore, simply because they have not seemed to work. I've always expected to get better because it's what I've known, but I'm afraid for the days when I will struggle just to keep myself from getting worse.

CF is a progressive disease, meaning it usually gets worse as time goes on. Treatments, pills, i.v. antibiotics and the other medicine available to cf patients has been shown to prolong life. Sometimes the problem with antibiotics is that they can make you feel even sicker than you already are. Usually patients adjust to the symptoms, and most of the time, the benefits of ridding infection are greater than the risks. I hate throwing up (who doesn't?) but I'm learning to suck it up.

I throw up from taking antibiotics and I get nauseous from tube feedings. I lose my appetite when I am sick and have been known to rapidly lose weight, while I continue to hear from everyone how important it is for my weight to go up. While people may think they are encouraging me, it is often the opposite. I hear how skinny I am over and over and over again like I've never heard it before. I hear that I am lucky and it could be much worse, I could have Cancer.

People compare Cystic Fibrosis with Cancer quite frequently. There are obvious pros and cons to both, but they both suck in their own ways.

It hurts, to have cf and hear it belittled. There are times when it is great to be looked at as normal, but there are times when it is great for people to understand that everything isn't always okay. Sometimes despite greatest efforts, my actions do not make me feel any better and I get worse; It's the nature of this disease and I understand that.

The bottom line is, I want people to understand. Even if my face looks fine and my weight is stable, it doesn't mean that I am. Mentally, physically, and emotionally it is difficult to cope with having a terminal illness or caring for someone with one, whether you are their friend, family member, or partner. I have days where I feel good, and also like you, I have days where I feel bad. I very rarely have days where I feel great but nevertheless I try to be grateful. I know I do complain, but I try not to.

I have Cystic Fibrosis. I am just like you, except I cough more, I can't always breathe, and I have other medical needs. I cry, yell, smile and laugh. I can do just about everything that you can do, although I know when I need to limit myself. I know that there are some things I can't and won't ever be able to do because of cf, but I'm trying to focus on the things that I can. I like to go out and have fun. I like to be normal and I try to make life as normal as possible despite having cf. Cf influences the decisions I make and to an extent, the journeys it has taken me on have molded me into who I am today. I am not a perfect patient, daughter or friend; having this disease does not make me equipped to be a superhero or superhuman. I am just a person. I have Cystic Fibrosis.. and I am just like you.

Sunday, July 22, 2012

Vulnerability

I spent the weekend staying at a friend's house and slept in a room where her brother used to stay. He smokes so honestly my lungs felt like shriveled raisins and I tried my best not to breathe. I'm not sure if it's phantom illness or if it was actually making me physically sick but either way I started thinking about getting really sick again and how people have different support systems.

I thought about all of the kids that do and don't have their parent(s) along with them in the hospital if they're in. It seems like kids that are in the hospital more often get left alone more. I'm assuming people just think that once you get sick, you get used to being sick if you have a recurring illness.

I thought about how my mom is usually willing to get me whatever food I want or material things that she can buy and little things like back rubs or whatever when she's around. I thought about how I know what to expect when I get sick typically so I'm not afraid of actually being sick. I also thought about how I'm not used to the feeling of being vulnerable.

I don't know about everyone else but I know that for me when I get sick I either want to be alone or I want to be surrounded by love. Not love by people showing up and having conversations with me or staring at me and asking how I'm doing (even though that effort is nicer than none at all.) Love by cards or letters or some form of acknowledgement that I might need someone and they are actually willing to be there for me whenever I may need. I don't expect people to drop the things they're doing if they're super important, but once in awhile it would be nice for someone to sacrifice something.

I get selfish when I'm sick. I want love more than anything. I want to be held, I want my back to be rubbed, I want to share soup in bed, I want my hair to be gently restrained, I want my feet to be rubbed.. I want to feel beautiful even if I have tubes coming out of me. I want to feel just as important as I do when I'm not sick. I don't want to feel all of that from a general person though. I want them to truly care about me and be selfless, I want them to think of me as a gift instead of a burden, and I want them to stay with me forever.

It's kind of strange if you think about it. Sans soup in bed and restrained hair, a lot of the things adults long for when they are vulnerable are the basic things babies need. Obviously I'm not saying people wanted to be treated like babies and talked to that way or anything, it's just a circle of life that continues on and evolves. I never thought of it that way before, so I thought I would share in the hopes that maybe someone can identify with what I'm trying to say.

Monday, July 9, 2012

Lightning Bug in a Jar

I read a book called Paper Towns and finished it today. I was going to do a giant post about that book, and maybe I will soon, but right now I wanted to talk about something else.

A Lightning Bug in a jar..

I was sitting outside two nights ago and I was admiring the lightning bugs that were flying around. I thought about how I used to catch lightning bugs and put them into a jar and how it seemed like they just naturally belonged in a jar in my room, until of course they somehow found their way onto the kitchen ceiling, but that's another post.

Now today, I watched an episode of Boy Meets World where Eric goes on a trip with his brother and he's afraid to come home because he feels like he doesn't have a life waiting for him there, so he'd rather stay where he feels important.

This made me start thinking about how I feel like a lightning bug in a jar. I feel like the jar is this house, this town, this state.. and here I am. I don't feel like I belong here. I'm not trying to insult my friends or family by saying this.*

People say that if you don't like something, you either change it or learn to accept it. I don't feel like I have a lot of power to change anything, and even if I did, I wonder whether it would make me truly happy temporarily or permanently, or if I would even be happier in the first place. I don't know if I'd rather stay here with what I know and try to settle into hating it or find out if changing my environment would truly make a difference.

I know that if lightning bugs do/did have feelings they would want to feel like they're free and I don't think they feel like that inside of a jar, but if the holes aren't big enough, they don't really have a chance to get out and maybe some of them live better lives in a jar than they would in the open air, but I'm not a lightning bug, I'm a human.

So if this is my chance to grow into who I'm going to be I want to go out and explore. Everyone else is going off to college or getting jobs and finding relationships or having babies. I just want to escape and go someplace else that makes me excited and helps me understand why I'm here and what makes me special. I felt that for a short time when my friend was here but it's gone again.

The world seems like such a big place when you're a child, but it shrinks when you get older.

I want to find myself again, I want to be happy, and no matter how safe or extended my life would be living this way.. I'd prefer to risk failure and have the chance to actually feel like I'm living rather than just waiting here for the sun to rise and fall every day and night. It gets old, I just don't know how I'd ever realistically make it on my own without being able to work or having enough energy to take care of myself. I kind of feel like I already missed out on my opportunity and this is it. I'm 19 and I feel like my life is already half over when these are supposed to be the best years of my life.

I see Eva and her faerie wings in her pictures and I have no idea how she had as much energy as she did. I know pft's don't always reflect how you feel, but I usually don't even feel like the machine is even close. People look at you and they say "you don't look sick," even the doctor's say I look healthy sometimes.. but I do wonder.. Eva wanted to live and enjoy everything and she did to her best ability. I want to learn from her and try to do that but sometimes I feel like a lightning bug in a jar, where you can only fly the same paths over and over and the holes aren't always big enough to escape. Stuck.






Sunday, July 1, 2012

My strength is in my tears

As long as I've been alive people have said to me "You're strong" and I've always responded with "No, I'm not" or "Thank you" to keep them from continuing on in a conversation that I didn't care to participate in.

According to Dictionary.com the definition of strength is "the quality or state of being strong; bodily or muscular power; vigor." Also included among the list of definitions is "moral power, firmness, or courage."

People with disabilities or diseases are often considered to be strong but I've never known why, even though I've considered fellow friends to be strong. I don't like to be told that I'm strong just because I'm sick. I think people automatically assume that what I go through is difficult and so they tell me that I'm strong. What I go through IS difficult, but that doesn't grant me anymore strength than what everyone else has.

When forced into emergency situations, there are three options. You either fight, you die, or you quit and wait to die.

Most humans CHOOSE to fight if they have the chance, but some do not always have that option.

Do you see where this is going?

I've tried two of the options I've listed above, and fortunately only one of them has worked out for me so far. You can guess which one that is.

In realizing that I'm probably going to stick around for a little while longer, I've learned that there is one circumstance in which I'm strong and it might surprise you.

I've experienced a lot of things as a young woman, and I've always tried my best not to let my own issues burden those I love. For that reason, I try to keep my obstacles as secrets to myself. I've been told that it's okay to cry, but it makes me want to try even harder not to.

When I finally give in, tears fall down my face, I look like a mess, and I feel like one too. This time I realized that what everyone has been telling me all along hasn't been because I'm sick, it's been because it's true. Or maybe it's because I'm sick, but I'm going to assume it's because it's true.

I'm strong. I do have strength, but it's not because of being sick or going through obstacles. It's because I have emotions, I have love, and I'm vulnerable. When I'm crying, it's not just an outpouring of tears. It's an outpouring of love.. and it's an outpouring of strength.

My strength is in my tears.

One of the biggest misconceptions (I think) exists about humans is that crying is a sign of weakness. I disagree, I think crying is how some people deal with being weak, and it makes them strong. It gives people a sense of security, as small as that may seem. There are pity parties and there are times when you realize "Hey, it's okay to be like this.." and that's when you realize you have strength, even if it's not the way you expect it to be. Strength brings hope, and hope is what carries a person. If you have even the tiniest bit of hope inside of you, you're going to be okay.

I know that sometimes it can be hard to find it, but maybe your strength is in your tears too? It's okay to show how you feel, even if it's just to yourself.

I'm going to leave off with this famous quote:
“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind." - Dr. Seuss
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Note: This is one of those moments where I feel like there's some kind of a life-changing breakthrough and then the very next day I read this and think "Wow, that was sappy" or perhaps "This doesn't make any sense." One of these days I'm hoping that the day-after won't be filled with negative thoughts, but instead that I can stand by what I've said and believe in it. When I think of these things and write them, they really do seem to help at the time, ridiculous as they may be.

I just hope this one isn't ridiculous.. and if it is.. (read above)

Thank you.