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.

SSI

I can feel my illnesses. I can feel their symptoms all over my body. No, they are not just labels, not just letters on a page. I’m hurt, constantly hurt. The sad thing is that I can’t show you because it’s down to my bones. It’s something MRIs and X-rays can’t see. For you, seeing is believing and that logic is flawed. “A 20 year old is this sick? Impossible.” I can tell you what is really impossible, Me getting and holding down a job. What is really impossible is me finishing college, I know I have tried to twice. What is impossible is for me to have a hour free of pain. I haven’t had one of those since I was 13. I am telling you that this is real and it doesn’t want me to survive. I’m telling you that I am terrified because I don’t know what I am going to do when I turn 26. I’m telling you that I am angry because none of you will believe me and help me.

I am stuck inside my body. It tortures me with full force and I am surprised that I am still alive. I’m devastated, I don’t get to have a normal relationship, I don’t get to have my own children, and I don’t get to enjoy more then half of what life has to offer. When I do what others do, I can’t enjoy it due to not being able to eat, stand, or make money. My room has become my fortress. I hide myself there due to shame and embarrassment. What man wants to date someone who can’t be productive? What friends want to go home at 9pm on a friday? Hear me, I am suffering.

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.

Lies Able-bodied People Believe

If this describes you read this.


Let’s talk about the myths that abled-bodied people ignorantly believe about disabled or chronically ill/ chronic pain suffering people. To make it easier to follow I’ll make it in list form.

1. “Because we are are disabled our minds don’t work correctly therefore we can’t be smart or defend ourselves and if we can, we aren’t disabled.” Okay first, there are mentally disabled people but that also doesn’t mean that they aren’t smart or that they can’t understand when you speak to them. Second, someone can be only physically disabled. That means that when you talk about that person whether they are mentally or physically disabled they can hear you and they are human just like you. Depending on the person, if they can say something, they will do something about your ignorance. And just because we can tell you to stop being an asshole doesn’t mean that all of a sudden we can walk or suddenly we are healed from our conditions. Think my friends, think.

Me, a disabled woman, traveling.


2. “Disabled/ chronically ill people can’t travel.” Travel is possible for us. It might be harder and we need accommodations but that doesn’t mean we can’t or shouldn’t! Our lives have been restricted enough so when you have a chance to live outside of your routine, you would take it. Especially if most of your life is going to be full of pain, sleeping, pills, doctors, needles, and surgery. Disabled people deserve a vacation too.

Me volunteering at Feed My Starving Children


3. “They like being sick because they like the attention.” I’m not saying that there might be some person out there like this, but I have never met someone who hasn’t been praying and crying because they can’t take this life anymore. People have committed suicide so that the pain would finally end. I don’t care if you think they are being over dramatic, they are fighting off their own body every second of everyday. Do not insult anyone going through chronic illness or disability by telling them that they enjoy feeling like they are being ripped to pieces every day because people to glance at them. Most of the time our attention is our caregivers dressing us or cleaning us or it’s people starring at us and judging us because we are parked in a disabled spot and we don’t have a wheelchair or because we have medical equipment sticking out of us and they think starring with a sick look on their face helps us with the fact that we have no choice in the matter.

Me enjoying a concert. Yes I am still disabled


4. “You are laughing and smiling so you must be fine.” Here’s something for ableists to remember, WE ARE NEVER FINE. We show you smiles and laughs because you don’t have the capacity to handle a mere description of how we feel. We never have a pain free minute. And sometime being distracted and laughing at something else helps us not focus on the fact that we are going to live like we just got hit by a train for the rest of our lives. If we lived 24/7 showing our emotions and truly feeling them, I think we would kill ourselves. 

5. “People with disabilities don’t work as well as able-bodied workers.” I’m just going to put this quote right here… “In several studies, including those previously mentioned, it was found that 91% of the workers with disabilities scored average or better when compared with the general workforce. Their attendance is also better.”

Just saying…

This is how I’m going to look at you if you speak for me.


6. “We have to talk for the disabled and chronically ill because they are just incapable.” Can I just say that when you speak for another person, you are telling them that they are not needed there and that they are useless. They know more about their lives than you do, so shut it and let them be a social being. When people start speaking for me, I make sure that they know that everything that they just said was not correct and/ or I tell them that my nervous system is broken not my mouth. We will stand up for ourselves.

I have only mascara on. You see how sexy beautiful I am. Yes I am still disabled.


7. “Disabled people are ugly and lazy.” Okay just like everyone else, beauty is in the eye of the beholder. Not everyone who is disabled looks the same. Not everyone who is disabled IS the same. We have faces just like everyone else and being disabled doesn’t effect our sexiness. We wear the same clothes, we wear makeup just like you, and we come in all different shapes and sizes JUST LIKE YOU. We just want to be treated normally and also have our disabilities and illnesses respected. Just because I feel too physically sick to wash the dishes doesn’t mean that I’m choosing to lay down and pass out. Laziness is a choice of not doing your responsibilities, when it’s not a choice you can’t label me as lazy. You can label me as not able, aka disabled… See how that works?

You know how long it took me to get my hair and makeup done? It was hard and stressful. Not lazy. Yes definitely still disabled and chronically ill.


I know that there is so so much more I could mention and rant about. If you have some that I didn’t mention or you want to rant off of one of these rants, comment your hearts out below. I love hearing about your opinions and stories. Don’t be afraid to ask questions either! I just got really tired of ignorant people this week and wanted to make some things very clear.