Getting A Port: What I didn’t know

So I got the port and let it heal. I have just started IV treatments at home. And through out this whole process I have learned things that I didn’t know before. Things that I couldn’t easily find on the internet.

Like the fact that a doctor has to refer you to a surgeon before you do anything. I know that may sound obvious but the process of getting the referral was not so easy for me. I started by asking my neurologist what she thought of me getting IV treatment. She continued to tell me that I should be drinking the 2 liters of water everyday on my own. At the time, I was struggling with eating one meal a day. I was so nauseous and fatigued all the time that I couldn’t keep myself awake for more then 5 hours a day.

I was hoping that this last solution would actually help me, even in the slightest. My neurologist didn’t believe in IV treatment. She wanted me to do everything necessary for getting better on my own. But she was only looking at the POTS. She didn’t understand that I have 9 other things effecting my health as well. She agreed to let me try it. Then she saw it was helping so she agreed to me getting the port.

(I’ve had many problems with my neurologist. Not thinking it was important if I was tested for EDS because “you can’t do anything about it anyway.” Her thinking that my treatment I receive from her is making me better and healing me. Even though she’s only treating me for POTS and migraines. Also thinking I shouldn’t be put on disability because I’m too young and I’m “getting better.” She doesn’t want me to be on it forever and I don’t want to either. But I’m 20 not able to go to school or get any job. I need assistance and if I do get it, I hope that I can get to the point where disability is no longer needed. Right now it is very needed. I didn’t know that dealing with doctors would be so difficult.)

I also didn’t know that, once approved, the surgery would be scheduled so fast. I went from getting approval to going to surgery in the matter of a week or so.

I also didn’t know that I would be awake during the surgery.

After prepping the day before by not eating or taking my medication the day of, I got to the hospital. The nurse went over everything I needed to know or let him know. He told me how to take care of it and let me feel a tester so I would know how it would feel under my skin. He made everything very easy. Once the doctor came in to introduce himself, he let me know that they would be giving me something to make me a little loopy and that the site would be numbed. I went in with oxygen and a hair net. The exposed my top half, just until right under my breasts. So yes I was exposed for a short time. But they put blue sheets over me making a square around the place where the port was to be placed and the bottom of my neck. They covered me in blue disinfectant that took days to come off. The doctor gave me the shots to make it numb and told me to look in the opposite direction. I only felt the pressure from him pushing the port in and the pressure of him pushing the catheter into my artery. In less then an hour it was over and I was at home icing and popping Tylenol.

The healing process took longer due to my EDS but once it was over we had a nurse come. I didn’t know that when getting fluids through a port, I would have a needle in the port for the whole time. They put the needle in and it stays there for a week. They come back after a week and take out the needle and then replace it with another one.

So I will have a needle in me until I decide to stop getting fluids. I will also have the patch over it with the tube.

I also didn’t know that I would be setting up the equipment and giving myself fluids.

Yes this is me in my home getting fluids. I hooked myself up and everything. There is a service that gives you everything you need each week. A nurse comes in, inserts the needle and teaches you and who ever would be setting it up how to do everything. The nurse taught me, my mom and my caregiver. The nurse then comes back in a week to change out my needle.

If you have any questions feel free to comment or ask me through social media!

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I know what I am

I know what I’m bad at. Looking sexy, staying on a routine, and maintaining my weight. I’m bad at telling people that I think I’m better off dead, or that I’m in so much pain, physically and emotionally. I am the worst at closing the wippies after I use them and at washing my face. I am terrible at letting people in and seeing what’s going on with me.

I also know what I’m good at. Being a derp, forgetting what I should do next, and not eating while still gaining weight. I’m great at saying nonsense so that people are distracted, or acting when I’m not alone. I’m a pro at drying out wipes and getting pimples. I’m really good at talking about what others want to hear and putting on a show.

I Hate Water

I'm frustrated with myself. To be more accurate, my body. I have always struggle with drinking water and I have been dehydrated and sent to the hospital because of it three times already. When I was diagnosed with POTS, I never thought that water would be the golden ticket to functioning. It's not only that I hate water, it's that drinking 64 oz or more in a day has proven to make me nauseous. Putting anything in my stomach makes me nauseated.

So what's the solution? IV hydration therapy. I thought, wow I can't believe I can do it this way! Then after two months of getting stuck with needles twice a week, I realized that I couldn't endure long term. Not just because of nurses missing the vein and having to stick me again or the crazy bruising around every area they poke and not even just the poking itself. It was because long term veins train themselves not to get poked and I would have to get a port.

What is a port you ask? To be honest all I know is that it's a device that gets surgically inserted into your body and it allows you to get fluids from there. Yes I'm chronically ill and I'm used to tests, procedures, and needles but I have never had a surgery as an adult. So I thought I'd try to drink water on my own again. I can't describe the dark yellow color that my urine is right now. And I'm drinking as much as I can endure.

So I'm frustrated. I don't want to do this but I know I have to. I have to take care of my body even if it means doing things I don't like. Until then, I am going to do anything else to ignore the fact that I'm crazy dehydrated. Hopefully until I can set everything up, I won't be hospitalized.

Nutcases, Pinterest, and Jesus

I want to write about my friends. I have a small group from church and I never imagined the friendship that would be created. I have many great girlfriends in the group and they have introduced me to whole new worlds.

They have broadened my faith in Jesus, expanded my musical tastes, and introduced me to beautiful new cultures. I hope I have done that for them in other ways. I hope that our friendship expands for years to come.

I have to admit that I am afraid. I am a person who is full of fear. I am scared that my friends will see something in me that makes them walk away. I'm afraid that this will end like the past ones. I fear that I won't have anything to give to them in our friendship like they have given to me.

As someone who is chronically ill, it is normal for me to not be reliable. But I want to be a person that they can come to, someone they want to come to. I want to impact their lives in positive ways. I want them to want me around. This is difficult for me to express. One day I won't struggle to tell them how I feel in person.

I love my Tuesday night nutcases. I love the women that have chosen to remain in my life. I wish them all the great things God has to offer. I wish for more 30 minute laughs. I wish for more inside jokes. I wish for more game nights. I wish for more chapters of my friend's book. I wish for more "drunk MM knows what she likes" moments. I wish for more Pinterest notifications. And I wish for more gluten free cookies and frosting! God willing, there will be more to come.

A Slow Hollow

It’s slow. Agonizingly slow.

With each moment it grows more

and more swollen.

Closing my throat.

Digging my nails into my neck

trying to catch one breath.

Hours pass and I don’t want to

keep fighting for survival.

I can’t get rid of the poison.

Every heart beat feeds it.

The longer I continue to live

the longer it has to find more ways for me

to suffer.

Who could ever love this reality?

To exist next to it.

Who would choose to suffer

because I had no choice?

It eats me.

Slowly consuming me.

Seven years, what is left of me?

It makes me into nothing.

I’m wasting away, unable to

choose my existence.

I exist as it wants me to,

Hollow.

I’m Just Fine (My First Rap)


People ask me “Why you don’t talk” all the time.

Well here’s your damn answer,

My body’s decaying, it’s breaking.

But no one gives two craps unless it’s cancer.

All I do stare up at ceilings

Trying to ignore the fact that my skin keeps peeling. Off

Damn Doctors, they insult me 

It’s all in my brain, they say.

Thanks Doc,

Slam the car door, mom asks those three words,

“How are you?”

My mouth is under padlock.

She just wants to hear that 

I’m still as strong not easy to knock.

Even if every words a lie.

[CHORUS]

I’m, just, fine.

I’ll be okay, I’m living a normal life.

It’s sad from time to time, but God is kind.

Don’t you worry about me, I’ll bloom on time,

I may have thorns in my sides, but I was made just right.

I have my eyes on the prize, it will just take some patience and Christ.

I’m, just, fine.

[CHORUS]

There’s not light, I look at the time. I have a realization,

The medication can’t stop the PTSD or depression, my silence is a confession, open your eyes and make a correction on how you see me before I make a stupid decision that will make you learn your lesson. 

See me. I’m weaker than you think, don’t blink, you might miss it. Terrified of the what if’s the worlds darkest screw it’s.

You tell me I can’t live this way, I’m lazy and I never move from where I lay. 

No really? you think I wanted this? What about all the things I miss? Really?

This is my body, not me. If pain wasn’t in the damn way I would runaway, stand in line just because this mother could, I would dance all night pretending this white girl was from the hood. Only if I could. 

You ask me with that fake voice, “Girl, How are you!?” 

And so the conversation goes…

[CHORUS]

I’m, just, fine.

I’ll be okay, I’m living a normal life.
It’s sad from time to time, but God is kind.
Don’t you worry about me, I’ll bloom on time,
I may have thorns in my sides, but I was made just right.
I have my eyes on the prize, it will just take some patience and Christ.
I’m, just, fine.
[CHORUS]
What should I say? You all ready know that the pain is chronic, that I have PTSD and I can’t love myself, that I dig so far into my body that bleed, it’s ironic.

Can’t be my own lover so I make myself uglier.

You know that. But say it out loud, you run faster then a freaking street rat. 

So I’m fine. Cuz it’s crime to check box other.

Mother always says to treat others how you want to be treated so I show compassion.

Even after you ask me that question in poor fashion. Because no should be alone.

Even if love was never shown. In the first place.

So I get another text, the same stupid question.

As if I could describe with the words in my possession. So I hold up a mirror and have them ask themselves. Thats all people have wanted since I was twelve.

And…

[CHORUS]

I’m, just, fine.

I’ll be okay, I’m living a normal life.
It’s sad from time to time, but God is kind.
Don’t you worry about me, I’ll bloom on time,
I may have thorns in my sides, but I was made just right.
I have my eyes on the prize, it will just take some patience and Christ.
I’m, just, fine.
[CHORUS]
If the pain would go, my heart could show, and all this loneliness would be just a memory. But just because that’s what it should be doesn’t mean it could be.

What A Broken Love We Have

I find myself in the same situation so many times. Misunderstood by my dad and his side of the family. Then I am the enemy when I try to explain and my mother is to blame, since she is the only one who raised me. 

Sophomore year was emotional. Not only was I dealing with health issues but also my fathers drug abuse. After I had enough of my life being in danger in the car one too many times, I went to my grandmother. I told her how he was struggling with addiction and driving under the influence with me in the car. How we went into on coming traffic and how I had to steer for him on 30 min or more drives. She did nothing, the only words she said to me was,”You are lucky to have a father.” The phase that my dad would use to excuse his actions. 

My father and I drive home. I was lucky enough to have my permit at the time so I could drive him home. I had had enough so I uttered,”Dad, it’s me or the pills.” He   Looked over at me while I was driving anxiously and flatly said to me,”I am not throwing away my pills.” Heartbroken I replied,”Okay.”

After I got home, I told him to not bother speaking to me until he got clean. What I didn’t expect was that it would take him a year or the blame I got from my grandmother and my aunt. Knowing everything, I was to blame. I was wrong to stay away. Even though he did clean up and now we have a relationship again. I am still a terrible daughter and granddaughter. They still don’t like my mother even though they have never put effort into taking care of me. Even though they have never taken an interest in anything I have done or have helped with my medical care. We have asked for money and they bitterly obliged. 

They love me when I sit quietly. But I have illnesses that are constantly screaming. I will not be walked over because I was raised by “lower class.” I will not take anyone seriously when they try to give me “treatments” when they don’t care enough to ask about or research the illnesses that I have. I will not take your words when it has to be said through others because you won’t tell me yourself. We pride ourselves on being family but we don’t even love each other enough to care about each other. Let’s stop pretending that our family is doing well. I am willing to fix what we can but first we need to acknowledge the truth and be honest.