when I was a young girl, I always thought I was one of the boys. I would play football, baseball, try to play basketball, I would wear baggy clothes and always hurt myself one way or another. While you’re young, you think that if you can get back up after you hurt yourself, that’s strength, that’s you being unbelievably strong. What you don’t know is once you start getting older, being strong comes in the form of heartbreaks, losing friends, going through life changing events, or getting through life through the most difficult times you can possibly imagine. You have to fight with everything you have to keep standing strong, you put your mind to something and you keep that goal in your mind knowing that this is where you have to get to, that is where you need to be. For most people with chronic illnesses, every day you wake up being as strong as you can. You fight each and every day to wake up and make it through the day. I’ve realized in time that I’m a fighter. I have fought over and over again for my health, my sanity, my peace. Most people may think I’m not strong but I’m stronger then you could ever imagine. I fight with all my power and all my might to achieve the things I need or want done. You have to keep pushing and you have to keep fighting for what you want and deserve. This does not just go for chronically ill either, this goes for everyone who struggles, anyone who doesn’t feel strong enough, anyone who needs that little bit of hope to get them through the day, well this is it. Everyone is strong in their own way and can battle any obstacle that comes in front of them no matter how hard or tough life might get. Keep pushing through and never give up because you might think it’s the end of life as you know it or feel like it but it’s not. The only way to continue to go is up.
Keep being strong,
while speaking to one of my close friends, I took a look back at my condition.
I always hear how strong I can be, how amazing it is that I let nothing get in my way, how I never stop living my life to the fullest. It’s great to hear don’t get me wrong but just with those statements bring me back to the main reasonings why I have to be so strong, why nothing can get in my way, why I have to be insanely obsessed with what brings me peace and also how selfish with my own time I have to be. I will be completely honest, any day I can wake up sicker and back in the hospital, any day this sickness can turn into my worst enemy and become something that can be worse for my body. I always have to keep that in mind and no one wants to wake up feeling like they are a burden on themselves or anyone else. What I have noticed over time is that my parents take the worst of my burden. When your child is born, you just want them to be healthy and grow up healthy. My parents ended up with a sick child. Endless doctors’ visits, endless hospital visits, medication that you cannot even pronounce half of the damn time, needles, surgeries and whatever else you can name. I cannot even explain how much both of my parents have gone through just with me being sick. I admire them so much and nothing would ever change that in my mind. From long nights in the hospital to unexpected calls begging to go to the hospital, my parents always put me first. But it can take a toll on them, it can be overwhelming. When you’re sick, you don’t just worry about yourself but you also worry about everyone around you and how they accept it. Some accept it perfectly and some think you’re lying half of the time when you have to cancel plans or when you have no energy to even get out of bed. Those are the kinds of people I hate, no I’m not lying but then again I have nothing to prove to those people because they don’t know how I’m feeling on the inside and they don’t carry this burden with them. Even as I sit here writing this, I look back on every trial and tribulation I’ve had to go through at such a young age and it is exhausting. Some days I have breakdowns in which I wish my life was never like this and other days I feel like a warrior princess who can take on any battle if I can handle it. Living with any disease is like being on a roller coaster ride with a blindfold on half of the time. You never know what’s coming and you don’t know whether you’ll go up or drop down. I applaud people with chronical illnesses, with diseases, with any little tricky thing going on in their body because all of us are stronger then we could ever imagine being.
With Strength & Concentration,
N. Rarity *image does not belong to me. Found on geniusquote.org*
Depression: feelings of severe despondency and dejection.
Depression is an extremely sensitive subject. Most people brush it off, most people deny that they even have it, and others…. take the situation into their own hands. Depression is not a game. It is not something you can just push to the back of your mind and act as if it is not there. It’s real and it’s dark.
For me, depression is a dark cloud that just covers my judgment and I try to swat it away with always going out. It does not help what so ever. Being alone, with depression can lead you into deep memories or deep thoughts that send you into a breakdown. Luckily for me, I have severe anxiety, I get emotional breakdowns and when I’m depressed… it ends up feeling as if the entire world is against me and I won’t be able to break out of it. You can fight, fight, fight, but what good is the fighting if it leads you nowhere? The same thing happens when you try to avoid it all together and you just end up running yourself into a corner, staring it straight into the face and eventually giving in to the dark cloud. I’ve seen people actually be judged for being depressed and I have also been one of them that have been judged and it’s another kick me while I’m already down feeling. For me, I am lucky to have family and friends by my side doing no matter what it is to keep me going. Even though I am a huge loner when I am in one of my funks, no one ever leaves my side.
Depression is definitely a real thing to talk about. It’s a real thing to deal with in general because the person who is going through it just feels like they are in quicksand and there is no way out. But, from experience, there are ways out. There are so many other options and hobbies to dive into that you end up experiencing life. My biggest depression fixer is my little guy. It must have been fate that brought him and I together but every day I come home to his face and I know that I’m always perfect in his little eyes.
There’s no better feeling then when you walk into a music festival for the first time. My first festival was in 2013 during my Disney College Program. I loved the music but I never knew about such festivals until one of my close DCP friends asked me to go. I was doing all new things, living in a new state so of course I said why the hell not. Now, you would think after all I have told you about my condition, I wouldn’t and shouldn’t go. It’s standing up all day for about 10+ hours, being in packed crowds, some people pushing and shoving, and dealing with people that you probably do not want to come into contact with. Most people believe that raves and ravers are just people who go to do drugs and just get wasted. Let me break that stereotype right now. I go to raves sober. Completely and utterly sober. I go for the music, not to forget everything that happened plus with my condition I cannot do any of those things so I take it how it is. It’s funny because some people I have come across have literally told me they do not know how I can do a 10+ hour festival sober but it’s actually wonderful. The vibes are amazing and the people I go with are even better. I have made so many memories, so many friends, and it’s a great experience. Of course, with my condition there are limits as well. I have to sit down at times because not enough blood runs through to my legs. I’ve been in unbearable pain on day two of three day festivals. Then there’s also post-festival flu. Once you finish with a festival you either go into post-festival depression or you get sick. I unfortunately get both. My body ends up shutting down and I can barely move for a couple days, but it is well worth it. Listening to your favorite DJ play the one song that got you into EDM makes everything so unreal. Each time I see Afrojack and he plays Take Over Control, everything just stops for a second and then I remember who I am with and where I am and then life just feels perfect in that one moment. My rave stats aren’t as great or as high as some of my rave friends but soon enough it’ll start growing. From Life in Color to EDC Orlando to EDC New York to EZoo and just recently Ultra, raving keeps my spirits up. A lot of people do not understand why I do it or they tell me I’m getting too old to continue doing this, but they do not have to understand why I rave. It makes me happy. In a life where things can be out of control I know under the Electric Sky is where I need to be and all my worries and fears can just go away for that short amount of time and I just enjoy where I am in life, at that moment.
To all the ravers I have come across and raved with, thank you for bringing me further and deeper into this life that we love and we all have in common. Thank you for always inviting me to those weekend raves and all the amazing memories I have with you and the memories that we will soon create
Inadequate. Unloved. Hurt. Hopeless. Deficient. Incompetent. These are words that while you’re going through a rough patch in life you go back and think about. You think about how this could happen to you and how much you wish things were different but they aren’t and you have to suck it up, put on your big girl pants and just deal with it. Remember how my last post was speaking on my flare-up? This week it got worse. Way worse than I expected it to get.
So of course it starts off with a minor cold. A minor flu. I knew I was sick but I thought it would go away on its own and then I would be fine. Monday through Wednesday I was functioning normally. Yes, I was sick and I noticed it started progressively getting worse but I thought nothing of it. I was going to be fine and nothing was going to happen. Wrong as usual.
I wake up Thursday morning to my mother slamming our front door leaving while I’m hunched over my bed on the verge of tears. I call my boss, letting her know I cannot go into work and then call my mother telling her I’m going to go to Urgent Care. I start getting ready slowly as each part of my body aches in pain and I head out to urgent care. I’m there for about two hours and they say I have an infection in my body and they prescribe me some kind of nonsense. I say nonsense because those pills actually made me worse. I went back home with my prescription, tons of pedialyte and a couple bottles of ensure because I did not feel like eating. I got into bed, took those pills and then fell asleep. I woke up about 2 hours later with sharp pains in my stomach that I only remember so well. I began freaking out and praying that it wouldn’t last. I was praying it was just a spasm that my body was having and I was going to be okay. I decided to fall back asleep just to check but once I woke up again the pain was even stronger. I called my primary doctor and he told me to go to the hospital ASAP. I knew something had to be wrong because I was not having stomach pains prior to that medication and I looked it up. The medicine clearly states do not take if you have a liver disease. I wanted to flip out because a doctor who clearly knew I had blood clots in my liver and I had complications of my liver, gave me a medication in which affects my liver. I called my mother and my father and told them to hold off on the hospital because I knew it was the medication making me feel horrible. I didn’t go to work on Friday either and I was on bed-rest minus the hour I went to my job doctor to get actual antibiotics.
The whole time this was going on, I was having emotional breakdowns which I haven’t had lately. All you do is think about how much pain you are in, how you wonder why this happened to you, why you are so defective and imperfect and how any one would ever be able to handle you. These are the lows of having a disease. Somedays you feel like giving up and Thursday was that day for me. I felt like giving up, I hated this sickness and I just let it take over my body and I gave into it. I wasn’t positive and I was incredibly rude to people who just wanted to help me feel better. I gave into thinking I wasn’t enough nor would I ever be enough trailing around with this sickness.
Let’s discuss the term “flare-up.” The definition of a flare-up is a sudden outburst of something, especially violence or a medical condition and in this case, I believe we know which is mine. I often get flare-ups if I do not get enough sleep, if the weather changes drastically, if I continuously go out, if I take an airplane, or if I just breathe the wrong way. The worst part about it is that I could go to sleep one day perfectly fine and the next day I feel like my body has been run over with an 18 wheeler. It’s hard to function throughout the day while you’re going through a flare-up because honestly all you want to do is stay in bed and not move throughout the whole day.
Currently, I’m going through a really tough flare-up. If you look at the main picture, you would think I look fine and there is no chance that I could be sick! WRONG! I was in so much pain and felt so sick but I managed to get through it. I do not know how it started, it could be the fact that I have barely had a day to rest in my bed curled up into a cocoon, but this is a hard flare-up. Remember the spoonie theory I introduced a couple posts back? Well counting spoons is a no go because I wake up in the morning with zero spoons at all, which means I have zero energy and zero will to even get up out of bed. That is the worst thing about having a condition and/or a flare-up. You wake up in the morning with no motivation and even when you find a little tiny bit of it; it’s gone as fast as you found it. With me, I wake up around 6:30 am to feed my puppy, go back to sleep for about an hour or so, get ready for work to leave my house by 9 am, to work from 11-7 and to get back home at 8 pm. So basically, I am dragging myself throughout the day to be out of my comfort zone for about 9-10 hours and even when I get home I either go out to enjoy my life or just go right to bed because my body cannot handle the pressure. What I am going through now is constant back aches, migraines, weakness, throwing up, stuffy nose with constant nose bleeds, chills, looking like I haven’t slept since 2016 and the list goes on and on. This is one of the worst flare-ups I’ve had in a while and all I want to do is sleep when I cannot even do that as much as I want to because weekends are my only free time for me. While you’re reading this you are probably wondering why I don’t just take pain medication and call it a day. Well, I can’t, it’s not as easy for me as it could be for someone else. Tylenol does not work anymore due to the years of using it and I am not allowed to take any other medication at all which leaves me with the only choice: Deal with it. So while you sit there, just remember everyone who LOOKS healthy may not be and everyone is going through their own struggles that sometimes can’t be easily fixed.
Okay, okay, I know I’m a day late with this post… my apologies *shrugs* let’s continue on with the story shall we?
*Warning: Semi-Graphic image in this post, post-operation*
You’re probably wondering in your head… hmm seems pretty recent and the truth is, it was way too recent for my liking. As I said, every 1.5 years I go into the hospital and this is the 1.5 year from 2014. I went to Florida in October with my parents as a little family vacation/friend-cation. I got to see a lot of my closest friends and I was happy because in Florida, I am the happiest. I barely slept and spent all my time with my friends taking advantage of every second there was. So my last night in Florida, I stood out until about 3-4 a.m. knowing that my flight was at 12 pm and I had to be at the airport by at least 10 a.m. With my condition, I need sleep, I need my body to rest and when it doesn’t then I go into a flare-up. So I get back home, a little tired and drained but I relax the remainder of that day that I get home so I think I’m fine. The next day I wake up to realize I feel horrible, and I mean flu-type horrible. So for the next week or two I just let it sit there because I cannot take any OTC medication (which sucks because I have constant pain and migraines… HEEEELP.) But for some reason, I ended up going to the doctor because after a while the flu began to turn into pain of some sort in my stomach so automatically that got me at attention to go get checked. I went through blood-tests, sonograms and cat-scans to check my entire liver area and something seemed off to my primary doctor. I ended up calling my liver doctor and the only thing I remember him saying to me was to head to the hospital immediately and get admitted. Once again, that is probably the worst thing someone can tell you. The good thing is I was processed within 4 hours in the Emergency Room to be admitted and I had a bed waiting for me.
The first day, I had doctors come visit me and asked me to explain what happened and how I was feeling. I went through a sonogram at the hospital to begin taking steps on what to do next. The next two days, I found out from the doctor that one, the blood clots had closed up AGAIN and two, I was going in for a surgery called TIPS re-visitation. What this means is that they were going back into my liver and redoing the entire surgery of opening the blood clots again. Once I heard that they were doing the entire surgery over again, I began to panic. I could remember the pain I went through the first time and just going through that again was not going to be at all pleasant.
I went into my surgery anxiety ridden. I was lucky enough to have the same man who did my surgery the first time with no complications be there to re-do this surgery. I laid on the surgery table, crying, while they began to put heart monitors on me and set up the room. One of the surgeons calmed me down by making me laugh, which I appreciated so much. I wasn’t going to be fully under anesthesia but I was going to have enough pain medication to knock me out and the good thing about sleeping in the hospital is that even when you’re tired you cannot sleep because people have to always come and check your vitals or you’ll be woken up at 5 a.m. to have your blood taken out. I went under until about the end and slightly woke up. I felt the pain of them inside my liver and them pushing down on my neck to get the tubes out and also continue the surgery. I still was heavily medicated so I couldn’t move but I made sure to make as much noise as possible so they knew I was awake. I remember that pain oh too well now and never do I want to go through it again.
The next couple of days were hard. I was throwing up everything I tried to eat and I was weak. I didn’t want to get out of bed but with my condition, I have to due to blood clots in my legs. I needed help walking around and also taking showers. (Thanks Mom) I was released the same day that I held any food down and was put on bed rest for a week.
So now, here I am.
On more medication then what I started with, having constant flare-ups and body aches, and just trying to get through the days without losing any spoons lol.