November 2016

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*

November 2016.

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.

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Post-Operation

 

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.

 

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Falling asleep texting and waiting for my parents!

 

So now, here I am.

June 2017

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.

 

Thanks for reading.

N.Rarity

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Invisible Illness

What is an Invisible Illness? An Invisible Illness is one that is not shown to the world. You cannot recognize that the person is sick or chronically ill but they are.  On Wikipedia, it describes Invisible disabilities as chronic illnesses that can significantly impair normal activities of daily life.  96% of people with chronic illnesses show no outward signs of it.  I am a part of the 96%.  I go through life struggling to even find the strength to wake up some mornings or to even get out of bed.  One day I can feel fine and the next, I could go into an entire flare-up.  A flare-up in my case is when all my symptoms come at once.  So my flare-ups consist of stomach pain, dizziness, migraines, sometimes vomiting, body aches, and feeling extremely weak.  There are days that I may have a flare up and I would still go about my day normally.  I push myself to extreme measures because some days I cannot just give up, some days I have to keep pushing myself to eventually make myself stronger in the long run.  I am a zebra, a spoonie, a rare-disease supporter and advocate. Now, you’re probably wondering what I just said.  Zebra stripes are used as the Rare-Disease ribbon, zebra is also a medical slang term for a rare or surprising diagnosis… hence me.  Now, a spoonie originates from a post written by Christine Miserandino found at the bottom.  This is when you measure your daily tasks by counting spoons.  Maybe sometimes you have a lot of “spoons” or you can come up short, leaving you with no “spoons.”  This is when you try not to mention your pain or discomfort.  If you have a lot of “spoons,” that just means you have energy to run your errands or go about your tasks.  I hear so often how I do not look sick, I look normal, how nothing is wrong with me… that is possibly the worst thing you can tell someone.  Even though I do not look, act, or portray that I am sick, I am.  My body hurts, my legs cramp up, my stomach is always in pain.  Do not try to downgrade my illness just because of my image.

This week was a very interesting one. The last time I visited my doctor was around February or March.  He ran some tests to find that I have lumps on my liver, from what, we have no idea.  So some liver tests keeps rising higher and I guess it may start to be a bother soon if it keeps going up.  Also, my liver collects acid and cannot get rid of it fast enough so I look like a dog with fleas, constantly scratching. So guess who has new medication to take! This girl! I already take two blood thinning pills and now I have to take this medication three times a day, which is going to be extremely hard for me to remember since while writing this I already forgot to take it on my lunch break. But unfortunately, I have to start taking them and actually remembering to.

That’s it for now, thanks for reading.

N.Rarity

 

*Picture is not mine, found on pinterest*

 

The Spoon Theory written by Christine Miserandino – https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

2014.

“There is no greater agony than bearing an untold story inside of you.”
– Maya Angelou, I Know Why the Caged Bird Sings

Let’s get back to the infamous rare disease in this post. After I was discharged from the hospital in 2011, I had to drop out of my sophomore semester of school even though I was only two weeks away from finishing. It killed me to drop my classes because I worked so hard and I knew I was succeeding but all that work ended up null and void. I had to postpone my summer job, which I loved, and was strictly told by my doctors that I needed to rest that summer. That’s another part that killed me; I had to give up a job I loved for a summer of rest. On top of all that, I could hardly hang out most of the time because I was still recovering to the point where I overdid it and almost ended up passing out in the Zoo because I stood up for too long. I felt useless, defeated, hopeless, and inadequate. I went into a deep depression that summer wondering why this happened to me out of all people. I went to doctor’s visits regularly, because since my blood is so thick, they have to check that my medication (blood thinners) is working correctly and that my blood is at a stable level. The test is somewhat along the lines of how you check for your sugar levels, you stick your finger with a needle, place the blood on a pad, and it reads how thick or how thin my blood is. I always have to be between 2 and 3 but recently just found out that stress can alter my blood levels, and if you know me, I’m always stressed out. I hated taking medication, I hated getting my blood checked, and I absolutely hated everything about this condition. So I was steady up until about 2012-2013. I always took my medication, did what I had to do, went on my regular doctors’ visits until I began to rebel. No one, absolutely no one, wants to take medication and after a while they started prescribing me other pills because my bones were so fragile from the blood thinners. Once they prescribed those to me, I gave up. I stopped going to appointments, I stopped taking my medicine, and I thought I was fine. Yes, I was reckless and until this day my parents want to murder me for stopping and sometimes I wish I didn’t, but I THOUGHT I was okay, I THOUGHT I didn’t need it, and I THOUGHT WRONG.
2011-December of 2014 I was alright, nothing went wrong and I was happy. I graduated college, I got to experience the Disney College Program, I had survived a lot and gone through even more and I thought I was healthy.
December 2014

jj
I went back into the hospital for a second time. Apparently the blood clots had started to close and I was sick once again. It was not as serious as the first time but this time, I wasn’t in pediatrics anymore. I remember people telling me I was not going to get same treatment as I did in pediatrics and they were right. The first night, I spent most of the time in the Emergency Room while I hustled my mother to get a wrist band and my sig. other since 2013 had known someone in the E.R. that they let him stay with me. When it comes to my condition, I don’t play games. My parents or someone has to be there with me because I am so mentally messed up when I’m sick that I will not comprehend what a doctor is telling me. My sig. other had put in his two week notice and he only had a few days left at his job but he had told his boss that I was in the hospital and his boss let him stay with me. My mother, father, and sig. other were with me the entire first night and never left my side. This is when the craziness occurred. They said my room was ready and they started bringing me upstairs, to put me in a hallway. Doctors would come and speak to me and I never felt more uneasy in my life because I was speaking about my personal business in a hallway. Now, as you see, I’m more vulnerable now then I was back then. My mother was furious and when she’s mad, you cannot get in her way mainly if it is something dealing with her daughter. I got into a room around maybe 8-9 am, I believe. Being in the hospital around this time was not so bad minus the horrible stomach pain and the fact I was on IV’s for about two weeks and then to add on top of that Christmas was a week later and I definitely did not finish Christmas shopping at all. I was scared most of that time though. I had already spent Easter in the hospital and I felt depressed, I couldn’t imagine spending Christmas in there while all my family gets to be together and if I was stuck in the hospital, I knew I was going to go back into depression if that was the case. I got released a week before Christmas and even though I was still getting back to being okay, and I mean okay in the ‘off IVs, no needles, and have to have strength’ kind of way. I promised myself I wouldn’t let this happen again, I wouldn’t have a scare ever again… but then I realized every 1.5 years; something has to put me back in a hospital. I guess it’s improper to think like that. But it’s true unfortunately.
N.Rarity