Chronic illness

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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Uncategorized

My Personal Disappointment

I am going to share some recent and not so recent events in my life that keep leaving me disappointed.

As I have talked about before, I was molested when I was 13. I’m not sure that I have talked about my family’s involvement in those events. Months beforehand, my cousin, who was 9 at the time, experienced the exact same from the same man. Mel had not only molested her, he had exposed himself to her. After him doing that, my cousin went to her mom, my aunt Cindy, and told her what he had done. My aunt proceeded to not believe her. Then after what happened to me, she finally was faced with the truth.

The years after we’re full of us trying to forgive. Forgive Mel, forgive Cindy. Forgive Mel for hurting us and to forgive Cindy for putting a man above her family. We managed to come to that point. I love my aunt Cindy. She has grown and she has taken care of me. But her living situation has not changed as much as it should have. She still has let men live in her house. She has one living there now.

Chris is my uncles childhood friend. He lives with Cindy. During his stay there, cindy has grown to care for him as they help one another. During this time, my mom and I were letting my uncle live with us as he was trying to recover from alcoholism. He had relapsed many times and we had given him many chances. It came to a point where he was refusing to stop drinking and lying about us to others in our lives.

My uncle was friends with my moms friends husband. Rita, my moms friend, was coming to my house and caring for me because I am very sick. It was a heaven sent. My uncle proceeded to lie to her husband, telling him that I was faking the severity of my illness for attention. Rita’s husband told her not to come to my house anymore because it was not necessary.

I am trying to get on disability because my illness has made it so I can’t work or go to school. My uncle doing this could have damaged this process and could have made it impossible for me to get better. We proceeded to kick him out.

My mom told my uncle and Chris that she did not want them to come to the house when she wasn’t there. He made plans to come with Chris when my mom was here so he could get his stuff. He told my mom that he wouldn’t come without her there. What does he do? He proceeds to come with Chris at 10 a.m. I’m asleep half naked in my bed. I wake up to the sound of them in my room taking the TV that he had lent me. They also proceeded to try to take things that weren’t there’s. The last time had felt that exposed and that disrespected was when I was molested. There is a man not related to me in my room, without permission, while I’m almost naked.

After my mom found out from my aunt Theresa. She called my aunt cindy and asked her why they did that. My aunt cindy knew of the rule my mom put forth, she was going to come with them, and knew that Chris and my uncle wanted and were going to disobey. She told my aunt Theresa but neglected to tell my mom. After cindy was confronted, she told my mom that “she made a decision and my mom needed to get over it.” My mom could have called me to wake up and informed me but instead my uncle and his friend were prioritized over us. Doesn’t all of this sound like it’s happened before?

Cindy neglecting to inform us about a man, and I end up in a situation that I can’t control. I end up with my privacy violated. I’m not angry in this situation. I’m frustrated and disappointed. My mom and I are constantly going out of our way to love our family and we get betrayed by them over and over again. We aren’t saints, I know that. But I would never put my family in the situations that my uncle and aunt have put us in.

So now, we have to take a step back. We have to set strict boundaries with our family. I am so utterly disappointed. I love my family but I can’t keep doing this with them.

Chronic illness

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.

Chronic illness

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.

Chronic illness

Remember the Facts


It’s difficult to remember the fact that I am not like able-bodied people. That I, in fact, cannot carry a half empty suitcase or look for high heels to match my outfits. I have to remind myself that the taller I stand, the harder I fall. That my joints hurt when I stand in gym shoes for less then 5 minutes. I have to remember that I am not healthy and that my body is described as broken.  In my childlike mind I am acceptable, society is forgiving, and there is faith in humanity. 

That’s just it isn’t it, I’m not a child anymore and I have missing pieces. I’m like an Xbox with no memory, I can play the game but I can never remember my place. My mouth is a broken record with endless power supply. I will never take no for an answer. This is what makes me a deadly combination. My insides constantly need attention and resources to survive. My mind always has a plan to take advantage of its opportunities with no thought of who it’s taking advantage of. Give my mind the task of helping my body survive and hell would break loose.

I need to remember that people are not like me. They can look good every day. They can work and get paychecks. They can stay awake without fainting. They can wake up without nausea and pain. I forget that I can’t stand without dizziness. That I’ll never be able to run again. That I have to use a wheelchair when on vacation or going on long outings. That one day the wheelchair might be permanent. I forget that I can’t take care of my own life. That I may never be able to have the job of my dreams or go through college. I forget that I am disabled. The opposite of able. 

I need to remember how much of a responsibility I am. That I have to go ten times further then every one else, work ten times harder then everyone else. All to end up at the same finish line. I also need to realize that I was given super human amounts of tolerance, determination, and strength. That I can stand for 2 hours during a concert while my back spasms, my joints scrape together, and my sciatic nerve won’t stop screaming. That just meant that I would scream louder because I knew that I would remember that night. I knew I would never regret that night no matter how long I couldn’t walk afterward because for one night I lived through a future memory that wouldn’t be about me taking my medicine or having to cancel my plans so I could throw up at home. 

It’s difficult to remember the fact that I am not like able-bodied people because I am no less than them and I’m too busy enjoying the passion of the moments to notice our differences. So I guess they don’t really matter.