cheesefrylover

cheesefrylover

Would you be a friend? At the end of us would I find a warm shoulder where a lover used to be?

I love you, forever, that’s true. But at what point do we call it? Maybe this is the last time I’ll let you make me cry. Maybe this is the last time that I’ll lay here attempting to conjure up your reasons to stay. When does love become a burden?

This quarrel, a losing game. Would you kiss me on that night? Stroke my hair on that night?

Despite everything you’re about to lose could you love me and let me go?

On this day in 2015, I was sitting in bed with Ethan (Willow’s father) and the phone rang.

Upon seeing my geneticist's phone number on the caller I.D, I immediately felt my heart drop in to my stomach. I had been waiting for exactly a month for this phone call and knew it could only go one of two ways: Either Willow had Cystic Fibrosis...or she didn't. Either our child would be born with a genetic, terminal disease...or she wouldn't.

So I swallowed the lump in my throat and answered the phone...

And she didn't.

The day Willow came in to the world is and always will be my favorite day...but finding out our baby girl was healthy comes in with a very, very close second.

Sometimes I have a hard time dealing with the fact that she will more than likely be my only child...that every time we have a kid there is that looming chance they won't be so lucky as Willow. (If I happen to be with a carrier again.) I spend a lot of time quietly picking up tiny little outfits and pjs she's outgrown, imagining what it would be like to box them all up and say “I'm saving these for the next one.” And for a few seconds it's nice to dream about the sound of four little feet running through the house instead of two...but then Willow says something like “Mommy, look!” (with pure amazement on her face) and it's a toy she's had for over a year that she forgot she had, I snap out of dreaming and remember that what I have in front of me is something so much sweeter than anything I could have ever possibly dreamt up, and not a single day passes that I don't think about just how lucky I am to call her mine. To have her. To see her sweet little hands reaching in to my bowl of snacks, to trip over one of her gazillion toys that are laying on the floor, or to wrestle her to take acetaminophen when she's running a fever. I love every single aspect of motherhood, even the not so glamorous parts. The random temper tantrums, the feeling like I'm assisting in an exorcism during bath time, the liking bananas one day and hating them the next...I love it all. And although when I was younger I envisioned a future with multiple sets of feet running, tornado-ing through our home, I have to say that the sound of just one pair is literally music to my ears.

Today I will not box up outfits and think of what we don't have, but will instead celebrate and be thankful for what we DO have...because believe me, it is so much more than enough.

Saturday morning at 9:00am my doorbell rang and I groaned and rolled over, ignoring it. I had just helped a friend move the day before and I feel like I moved enough boxes to last me a life time. I ignored the first doorbell ringing and pretended to be dead because in my opinion, no one should have to do anything before 9am on a Saturday. The doorbell rang again at 12pm and I was a little more accepting of this and ended up in the back seat of a car with 5 people in it headed to Tampa. If you’ve ever been to Ybor City, you shouldn’t be surprised to learn that I now have a giant bruise on my left knee and lost an entire fingernail dancing. Despite this, I had never felt more at home than I felt on the journey home stuck between two friends and retelling stories of the night before. My favorite part of the entire trip was being able to have the aux cord for four minutes and playing Devotchka’s ‘‘How it Ends’’ while I stuck my head out of the window on the way to a casino and no one talked the entire way, we all just listened.

On my way to go get my nail fixed the following night, I contemplated whether I should walk or ride my bicycle. The decision was solely based off of what I was wearing. I decided to walk because the dress that I wore already had tire marks forever engrained in it due to riding my bicycle in it before. Before leaving my house, I took $15 out of my tip jar I leave on my kitchen counter. I did this because I knew on my way there I would happen upon multiple homeless people…and honestly I never carry cash on me so I wanted to this time for that reason alone. It did not go to waste and as I took my time on my walk, I had some great conversations along the way.

On the walk to the nail salon I said hello to every person I passed. I felt high off of my neighborhood and all of the familiar faces I passed on the way there. I had passed a friend in a vehicle who excitedly knocked on his window to get my attention while walking past and it felt so good to have someone excited to see me through a window. A friend.

I walked in to the nail salon I have been going to for four years now and was met with Judy’s judgement when she learned I had somehow yet again ripped off a freshly manicured nail. She grumbled something about how I am the clumsiest customer she has before she got to work on fixing it. She sat a glass of white wine in front of me without asking and said ‘‘You’re going to need this.’’

I realized over the weekend and on this night that this is what home feels like; being surrounded by a community of people that know you and love you.

I can’t imagine my life any other way.

I used to think I wanted to be as far away from Jacksonville as humanly possible. I was in a relationship where talk of moving was incessantly being had. New York City, DC, North Carolina, the mountains in Georgia. There was just no way the person I was having these conversations with could ever understand what Jacksonville meant to me but I had the conversations anyways because I was under the impression that home could be anywhere as long as it’s with the right person. But there was always this small part of me that hated these conversations because of the home I had spent years building for myself. I dreaded the thought of giving that up to spend life with someone who couldn’t have been happy with me just anywhere.

I went through a custody battle in the midst of these talks and remember feeling relieved in a way that one of the rulings was that I would have to stay in Jacksonville until my tiny human turns 18, but I immediately knew how the relationship would end, even before it did. Three months later it ended and he is now in New York City living the life he wanted to the entire time we were together; the life I had held him back from. I realize now that if I had went with him, it still wouldn’t have been what I needed because he never could be, and truthfully you just cannot make a home out of a person.

I am happy to be where I am. To be home. To have friends that I love who love me in return.

And it feels so good to be home.

Last night was the first new moon of 2022. I got together with some friends, wrote some manifestations down on pieces of paper, and then burned them at midnight. I’ve never participated in a New Moon Ritual but thought it might be a fun way to set intentions and focus on what I really want for myself this year.

While writing my list, my mind kept coming back to the words ‘‘Be intentional.’’

Throughout the night, I thought a lot about what that meant for me and how I could bring that manifestation to fruition.

To me being intentional means knowing what you want and doing what you can to get what you want, in a very purposeful way.

This could be in any aspect of your life. Work, friendships, relationships, putting better things in to your body, having a stronger focus on goals you want to achieve, letting go of things that no longer serve you, changing the way you speak to people, the way you think, the media you consume, and more.

I realized more than anything that just as much as I want to live more intentionally, that I also want the people in my life to be intentional with me. I can’t expect it from others if I am not living up to it myself.

Here is to being more intentional.

A few weeks ago I was on the phone with my ex I was still trying to be friends with crying over the realization that I needed to end a friendship that had become very toxic. He said something to me along the lines of ‘‘Sometimes you just have to accept that that is who that person is’’ and though he was not referring to himself when he said this, it opened my eyes to how I had been allowing him to treat me for well over a year. It was almost comedic listening to him tell me I deserved better than what I was getting from someone else. But in my already emotionally heightened state, I kept how I was feeling to myself and gave myself time to think about things rationally, separate from the pain I was already feeling from one friendship ending.

It wasn’t until he let me down for the trillionth time just a week later that I finally just said ‘‘You know what? No more. I’m out.’’

Lately I have been trying to be more of a friend to myself and look at things from a perspective of ‘‘If someone did this to my friend and they told me about it, what would I tell them to do?’’

No one should put up with being love bombed, manipulated, lied to, mistreated, and emotionally abused.

I think sometimes we know we deserve better but it’s difficult to go out and get it because when you give so much of yourself to someone, you lose pieces of yourself. Eventually it is impossible to feel like you can be whole without them.

I’m here to tell you that even though in a way that may be true, it is possible to build and find new pieces. To grow. To become whole again, without the person you feel holds so many pieces of you.

If you find yourself making excuses for someone who does not treat you the way you deserve to be treated, I urge you to cut them off and then watch how you blossom when you’re not being weighed down by rotting roots. Replant yourself and give yourself some sunshine. You deserve it.

I made a Fanhouse page so that I could have a safe corner of the internet to share intimate details of my life I wouldn’t typically share on other platforms like Instagram, Facebook, and Twitter; safely hidden behind a $5 paywall.

It donned on me the other day after getting sick with what I thought originally was a Cystic Fibrosis exacerbation that while I share photos of my pets, what I had for lunch, dating drama, and everything else I share on there, I have been leaving my followers out of possibly the biggest thing about my life: That I have Cystic Fibrosis.

I realized that if I have a hospital admission, which is something that typically happens every six months or so, that everyone who follows me on there might be confused and worried—so this is to kind of pre-emptively let my followers know that when that inevitably happens, it’s not that deep.

Cystic Fibrosis is a progressive genetic disease so as you get older, it gets worse. It mostly affects the lungs and over time, limits the ability to breathe. It is the most common genetic disease affecting more than 30,000 children and adults in the United States. (70,000 worldwide.) You inherit one CF gene from your mother and one CF gene from your father. Approximately 1 in 35 Americans are a carrier of the CFTR gene mutation, which means that 10 million Americans are Cystic Fibrosis carriers. If two people are carriers, there is a 25% chance that your child will have Cystic Fibrosis. In 1982 hospitals started implementing tests for CF as part of the newborn screening process but as new genes were discovered throughout the years, a lot of babies slipped (and continue to slip) under the radar. Because of this, I was not diagnosed until I was two years old.

I was very frail as a child and was diagnosed because I was going through something called failure to thrive. At diagnosis, it was discovered that I needed a feeding tube to help intake more calories than I was able to take by mouth. I had a g-tube from age 2-15. When I was 15, I was able to demonstrate that I had my calorie intake by mouth under control and was able to maintain a healthy enough weight for my CF team to feel comfortable with me removing the feeding tube. I actually took it out myself and it was supposed to close up on it’s own but did not so for an entire month every time I drank anything, it came out of my stomach. (Which made me very popular with the guys—just kidding!)

People with Cystic Fibrosis are born with a protein in their cells that doesn’t work right. That protein is called CFTR. CFTR controls the flow of water and certain salts in and out of the body’s cells. As the movement of salt and water in and out of the cells changes, mucus becomes thickened.

In the digestive system, CF mainly affects the pancreas. The thickened secretions can block the ducts in the pancreas. This blockage causes a drop in the amount of digestive enzymes the pancreas puts out, which makes it difficult to digest food. Because of this, CF patients have to take digestive enzymes before consuming any calories.

In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. For this reason, avoiding germs is is a top concern for people with CF. An increase in infections can cause the lungs to deteriorate over time which results in a loss in lung function. My lungs currently function at about 60% which means that eventually I will have to receive a lung transplant. Most people do not realize that transplanted lungs only last for about 5 years but can typically last for a shorter amount of time or longer. The longest documented single-lung transplant patient survived 30 years post-transplant.

When I was diagnosed, I was not expected to live past 8. Today, because of improved medical treatments and care, more than half of people with CF are age 18 or older. Many people with CF can expect to live healthy, fulfilling lives into their 30s, 40s, and beyond. This is thanks to medications like Kalydeco, Orkambi, Trikafta, and Symdeko—all of which I am ineligible for due to my genes. I am in the 10% of CF patients that CF modulator therapies will not help, but pharmaceutical companies like Vertex are constantly working on new drugs and it’s just a matter of time before something I can take is on the horizon.

Hospital admissions usually come in the form of a two week stay where a tune up is done. During a hospital admission, a PICC line is placed in one of my arms. A PICC line is a long, thin tube that’s inserted through a vein in your arm and passed through to the larger veins near your heart. It is generally used to give medications or liquid nutrition. A PICC line can help avoid the pain of frequent needle sticks and reduce the risk of smaller veins in your arm being damaged. One of the risks of a PICC line is blood clots and infections. PICC line infections aren’t fun and can cause sepsis if not caught early enough. Sepsis is life-threatening.

I am actually allergic to one of the I.V medications I have to receive through my PICC line (Vancomycin) to treat my lung infections so before each dose I have to take I.V Benadryl through my PICC line which basically makes me feel like an extra on the Walking Dead.

Being hospitalized in general is pretty risky for a CF patient because hospitals are filled with germs, so most CF hospitals will allow a patient to do I.Vs at home through a home health agency. I typically do 7 days in and then continue the IVs at home, along with other parts of my CF regime like oral medications and breathing treatments alongside chest physiotherapy using a VEST—mine is pretty and pink, of course.

I’m due soon for a tune up so stay tuned for that and as always, thank you for reading. If you’d like to follow my journey with CF and receive health updates as well as updates on all the happier parts of my life, go here.

If you’d like to donate to the Cystic Fibrosis foundation you can do so here. :)

Being in love with the wrong person is like drinking a nice cold glass of water but still feeling parched.

You told me in the letter you wrote me that you associate me with vanilla.

I wonder if you hear my voice every time you make cookies or smell sweets in the air?

I always thought of myself as someone you couldn't appreciate. I didn't know you loved me as much as you loved baking.

But now I buy vanilla perfume from small shops and hunt down vanilla lotions.

I want to be the person you imagine I am. I want to be someone you're proud of.

I’ll start with vanilla and I’ll write you back some day.

The city looks so good on his body, I feel all of the lights when he’s on me.

Cathartic. Incandescent. Electric.

He has 2am on his lips and I taste whiskey when we kiss.

I get drunk off of how much he means to me every night and struggle to sober up before the morning light.

It’s overbearing. It’s suffocating. It almost is too much.

But there’s not a lot I wouldn’t do just to feel his touch.

So I’ll wait for him downtown for him to finish making rounds

And when he texts “You up?” I’ll text back “Yeah, you down?”

I put my head where my feet should go

and just laid there quietly.

It took a little while to fall asleep

but then I did.

I don’t remember dreaming.

I suppose something danced in my head.

I was just happy to wake up to the quiet

when the sun came up.

Birds were chirping,

cars whizzed by.

But in my room with the door shut,

it was quiet.

Really quiet for the first time

in a long while.

I realized I wasn’t thinking.

Wasn’t on.

Wasn’t trying to figure out

what to do.

Trying to tell myself what not to think about.

That’s how I spend most days,

telling my brain

‘‘Don’t think that, it’s bad for us.’’

Not today.

No, today it was quiet.

I lay still, taking it all in…

And it was nice.

I hope that happens tomorrow, too.

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